“As a 13-year-old, I did not expect that hidradenitis suppurativa (HS) would have a huge impact on my life. In fact, I had no idea what HS was. I thought that the abscesses forming were a normal part of hitting puberty and tried to ignore the pain. When I was 17 years old, I learned that my condition was abnormal. Everything changed; I believed that I would be extremely limited in what I could eat, how I could exercise, and how I could handle my stress. At times, this has turned out to be true. I have not eaten dairy in four years, I have to be careful to wear non-chafing clothing when exercising, and I work to reduce my stress as much as possible. Living with HS can be extremely grueling, and having to visit the doctor's office multiple times every year because I cannot seem to control my flare-ups yields a feeling of hopelessness that I believe is unique to chronic illness. However, HS has taught me to be strong. HS has forced me to handle life's challenges while being in near-constant pain. HS has taught me to keep fighting even though it may be the last thing I feel like doing. Finally, HS has --I believe, most importantly-- allowed me to see that everyone has inimitable experiences. One can never know exactly what another person is going through, but it is imperative to understand that others have their own unique challenges. In the future, I will use my learned resilience to become a physician. My experiences with HS will help me to remember that everyone has unique experiences; I never want to become the physician that claims that someone else "has it worse," or does not believe what a patient suffering from chronic illness is trying to convey about their own pain. I hope to become a physician that my patients do not dread visiting, but an ally that they can trust and gain strength from.”
“My journey started in 2019 after a full year of pain and muscle spasms in my entire body. The pain increased, and I gradually lost flexibility despite physiotherapy and chiropractic sessions. It was not easy to diagnose me. I was referred to different specialists before my primary doctor finally decided to refer me to a rheumatologist. I had an MRI and blood work done that showed inflammation in my hip and spine. I was finally diagnosed with Ankylosing Spondylitis. I did not know what was lying ahead for me with this new diagnosis. I was slightly relieved to have a name for all the fatigue, back pain, and muscle spasms I was experiencing. I was also in denial, and it took me a very long time to accept that I had a chronic condition and would need to take medication. The last few years have been challenging. I have switched biological agents, had multiple visits to the doctor's office and had back pain and muscle tightness that would not go away for days. I have learned the true definition of being patient, resilient, and staying positive and grateful despite the misfortunes I may face. I have learned how to challenge myself and excel in many aspects. If I cannot control my chronic disease, I will focus my energy on work and education. I have finished an MBA in healthcare management while working full-time with a young family to support. All while I was processing a newly diagnosed disease. I have started a new journey and am pursuing a doctorate in Healthcare Management focusing on quality and analytics at the University. My newfound strength, courage, resilience, and perseverance will help me immensely in my new endeavor. I plan to become a healthcare quality and safety manager, and this scholarship will help me achieve my dream. Living with Ankylosing Spondylitis has been a challenging journey. However, it has taught me many things about myself that I would not have known without it. I look forward to continuing my journey with my newfound outlook on life.”
“My childhood was everything I could have asked for; I had loving parents and friends, I was pursuing my passion for dance, but most importantly, I was happy and healthy. Everything in my life was on track. Before I could blink, I was veered off my path by one, nine-letter word: Adversity. It tackled its way into my life at just 11 years old when I was diagnosed with severe Crohn's disease. I dealt with indescribable stomach pains that consumed my happiness. I stopped growing and gaining weight as my body was not absorbing nutrients and I began to look different than my peers as they blossomed over me like a tower. I felt as if I was a dandelion in a field full of sunflowers. Two years following my diagnosis, the light at the end of the tunnel grew microscopic. I tried every treatment possible. From infusion therapy to steroids to having to completely transform the way I ate. For 16 weeks, I received all my nutrients through a nutrition shake, every day, my “meal” uncomfortably transmitted through a feeding tube. I never truly realized the importance of having variety in your life as taking in the same things every day makes you go crazy. After everything that I tried, nothing worked. With nothing else to lose, we resorted to our last option...reconstruction surgery. By age 13, my body undertook the removal of 18 inches of intestines and a vigorous three-month recovery. Today, I am proud to say that I have grown, not only in height but as a person, and feel that I finally have become the sunflower I strived to be. My story and experiences have allowed me to conclude: adversity may be a negative word in some eyes, but in mine, adversity has provided me with opportunities to grow my character and who I am as not only a person but a leader. I lead myself and the people around me through adversity with my determination, grit, and positivity. I know what it takes to be determined and how to preserve through the most difficult times that life may bring.”
“I can’t remember what it feels like to not be in pain. I thought it was normal to be achy, swollen, and always feel like I had the flu. I would look at the other kids my age and wonder how they had so much energy and were always so happy. Were they not in pain when they moved around? What was so different about their bodies that made it easy for them to do the lunges in gym class? Why did they not have the itchy, burning, red patches on their skin? Living with chronic inflammatory disease has scared me, frustrated me, made me meaner, and made me cry, but it has also made me different. I have more respect for the suffering that cannot be seen, and more compassion for the suffering that I can see. It has allowed me to appreciate the determination it requires to get up every day and be responsible for your own life and the cards you have been dealt, because there are goals to reach and people to help. It has pushed me to find ways to go around the mountain instead of climbing over it, and put me on paths leading to the most inspiring people and incredible places. It has transformed me from a pissed off, scared little child asking all the questions into a grown person who now goes searching for the answers. As I continue to pursue my masters in physician assistant studies, there are times when I find myself thinking about that scared little child I used to be. Being awarded this scholarship will allow me to continue asking questions, but this time the questions will be about how to help my future patients. Using the knowledge from my own journey as ammunition, I will keep bulldozing the boulders and knocking over the skyscrapers that stand in my way until I find the answers.”
“The body lies to you. It tells you that your muscles will not wither, that your hands will not shake, that your frame will stand tall. That it will carry you as you chase your dreams. But there was a time that I looked at myself in the mirror and I no longer recognized the person staring back. My muscles were atrophied, my body was shaking. My Ulcerative Colitis had even changed the shape of my face, swelled by the high doses of steroids pumped through my body. Before,I had found pride in the vigor of my athletic ability, found solace in the strength of my hands as I volunteered for my community, felt confidence as I willed myself to sit at a desk for hours, studying not for myself, but for others who I might help in the future. Battling my disease was not just a biological process; it was an emotional one. I had to learn how to radically love myself not for my abilities, my experiences, or my value to others. I learned to love myself despite, and because of, my disease. As a future public health leader, I know I can sustain my passion and nerve for the work while pouring love into the communities I will serve, by pouring it into myself as well. While this journey has taught me to love more radically and unconditionally, it is not one that I would wish upon others. To be chronically ill is to suffer, and I will not pretend that it was a blessing in disguise. But I can say that my love fuels me to create a world in which others do not have to suffer unnecessarily.The top leading causes of death and morbidity in the United States are preventable, and they affect society’s most vulnerable. As far as we know, my disease is not preventable, but if it was, I would hope that someone out there like me was striving in a Master of Public Health program to make sure that our future generations don’t live in a world created by inequitable systems designed to keep people sick. I can use my love, my new recognized power, and my education to make the world a better place.”
“Hidradenitis suppurativa has been a part of my story since I was 12 years and has taught me life lessons in body confidence, advocacy, and the importance of communication skills. Having scars on my body that made me look different at a young age meant that I needed to learn to communicate with my peers and explain with patience how my autoimmune disorder made me different. As someone who always played in competitive sports, I learned to advocate for myself with coaches when I needed a moment to care for myself during difficult outbreaks. As an adult person now, I am in support groups where I have learned to love my skin and to support men and women who want to love their bodies past HS. My dream of pursuing a doctorate in occupational therapy is greatly due to the strengths I have built through navigating the challenges of this disease. I want to utilize the lessons I have learned managing my HS to improve future patients' access to self-care, to advocate for those in need, and to be able to help adapt patients to their meaningful occupations no matter the illness or injury they are coping with. To me, the most important thing in life is to be able to engage with the people you love and to find a meaningful purpose. Just like with my HS, I believe that there is no illness that should prevent a person’s ability to find connection and happiness in their life. Attending occupational therapy school will allow me to spend the rest of my academic and professional career making sure that my patients have the skills to lead fulfilling lives no matter the unique challenges they may face.”
“Living with juvenile arthritis, I look like a normal seventeen-year-old. People do not see the joint pain or bi-weekly injections. Although the disease itself is a struggle, I believe the mental aspect has taken a toll on me as well. I have had to be strong-willed, even when I felt like giving up. As a young person, I have heard all the funny comments about my condition. Although people may think their remarks are harmless, it gets to a point when it hurts. In a way, the rude remarks are more hurtful than the disease itself. As I have went through high school with juvenile arthritis, I have learned to be strong. Both emotionally and physically, my disease has taken a toll on my body. As I go to college and out into the real world, I will remember how I stayed strong during a time of struggles. Looking back on the past few years, I am thankful for my disease. It sounds silly to say it that way, but it is true. I have been through an excessive amount of mental and physical pain, but the lessons I have learned along the way make it worth it. As I go through life, I will remember how strong I was during such a dark time in my life; I will remember that I can make light of any situation and stay positive. Juvenile arthritis has changed my outlook on life, and I am thankful for the strength this disease has given me.”
“Growing up with psoriasis was not easy, nor is it now. I remember wearing long sleeves and pants in 85+ degree weather so that no one would see my spots. I'd take extra time to try to comb out the flakes in my hair, do tons of research in high school for products that could soothe the stinging or dryness, and just hope no one would embarrass me for having flakes on my clothes or backpack. As time went on I worked so hard to be in a position where I would pray that students saw the varsity sport player, the really smart student, or the kid building drones, before they saw the kid with psoriasis. This meant working my butt off in the gym, running for student council, going the extra mile for straight A’s in school, all of which just built more stress and made everything worse until I felt something inside me. I don’t know when the exact moment was, but one day I just didn’t care what people thought of me anymore. I finally felt more comfortable about what I wore or what haircut I got, and spent more time doing stuff I liked to do rather than going crazy making another image of myself. I realized that it wasn’t worth it to fret over others’ opinion of me, but rather to stick by those who truly supported me. This idea snowball affected its way into all aspects of my life and allowed me to not be embarrassed about myself or ask questions to anyone. The new lifestyle allowed me to get the most out of or lead to new experiences like my internships. I wouldn’t say that this revelation is the reason for my success nor all the doctor’s visits and being made fun of was worth it, but I am proud that Psoriasis became not an excuse, but a tool to push me through whatever life throws at me. Ultimately, I hope to continue to work hard and push myself out of my comfort zone so that when I do attain my goals, I can spread my insights to others who face situations just like that sweating 7th grader sweating in a hoodie those many summers ago.”
“I have a quote hanging in my room that reads, 'My path may be different, but I am not lost.' The author was listed as unknown, but I have a feeling that person may have had a chronic illness. I was diagnosed with hidradenitis supprurativa about 3 years ago. I still don't think I pronounce it correctly. Prior to that diagnosis, I was already dealing with ocular histoplasmosis and a thyroid condition. Throughout my various diagnoses, I have learned several lessons that can be applied to my journey to a college degree. Number one, don't be afraid to ask for help when needed. I tried treating my sores myself when they first appeared. Needless to say, that didn't go well. There is no shame in asking for help and I have learned to speak up and ask for what I need both in school and in regards to my healthcare. Second, I have learned that I am capable of juggling more than I thought. I sometimes have to juggle multiple appointments that are hours from home in addition to my school work. When I have multiple large assignments due all at once, I will use the tools I have learned juggling appointments and medications to help break down the assignments into smaller pieces that are easier to manage. Third, I have learned that a bad "flare" or a bad week doesn't mean the end of the world. It certainly may not seem like it at the time, but things get better. If I have a particularly difficulty class in college, I need to remember that I have been through hard things before and I am capable of overcoming hard tasks. Finally, I have learned that I am resilient and resourceful. If one treatment didn't work, I tried another one. I plan to apply the same work ethic to my college course work. I am willing to put in all of the work needed to be successful in my college career (and beyond).”
“When I started college as a first-generation, low-income student in a city over a thousand miles from home, I expected to face new challenges. I did not, however, expect to be diagnosed with a chronic inflammatory disease (ID) before finishing my first semester. Cognizant of my newly diagnosed ulcerative colitis (UC), I was imbued with a new drive to make the most of my college career and beyond, learning how determined and resilient I am. Despite knowing the limitations of traveling with an ID to a low-income nation, I did not hesitate to accept an internship abroad. I was determined to pursue my passions and not allow UC to limit my experience. As I completed the first two weeks of my summer internship in a remote village in the mountains, my UC began to flare-up. Although it continued to act up, I decided to stay, further discovering my perseverance and resilience. UC has managed to keep me aware, adaptable, positive, and open-minded. My condition was nowhere near stable when I was accepted to medical school. Despite treatment, flare-ups would haunt me unexpectedly. I decided to defer my enrollment to better manage my condition. While I first saw this as an obstacle, I learned to see it as an opportunity; an opportunity to further explore other interests. As I pursue a combined medical degree and master in public health, I see my UC differently. I now see my UC as a teacher. The lessons I gained from UC continue to help me tackle challenges with a positive mindset and encourage me to persevere when things become uncomfortable or difficult while respecting my body and prioritizing my health. Today I can proudly recognize that I have been diagnosed with an ID. My UC has made me stronger; my UC does not limit me; my UC will only help me tackle challenges ahead in my education and profession with enthusiasm and an open mind. Because of my UC, I believe I will be a better, more dedicated and compassionate student, physician, and human.”
“A teenage child in a generation consumed by social media, it’s difficult to escape the endless amounts of posts and selfies. It’s clear that all of my friends love to be behind the camera. I didn’t see how much of a struggle my confidence was until I noticed how I removed myself from pictures. My psoriasis is most prevalent on my face, difficult to hide, especially because I have to steer clear of facial products due to my worsening skin. I have recently begun a journey to becoming more confident in who I really am. I often try to remind myself that I am more than the skin I am in. It is easy to forget that I am still a person beyond my outside appearance, and while I will always have my insecurity, I won’t let it hold me back from pursuing my dreams, which includes a degree in nursing. One of the many things I have learned throughout my process is the journey of trial and error. Navigating through many dermatologist appointments and prescriptions has taught me that things rarely go exactly as planned. I have been able to carry this lesson of commitment with me into my schoolwork and extracurriculars. If there is an end goal in mind, I will accomplish it no matter how many failed attempts it takes. My psoriasis has brought out the resilient, motivated side of me that I never knew I had. Another lesson that I have been able to bring into my daily life is that success requires sacrifice. One of the only solutions that has really helped to start to control my facial psoriasis is to eat sugar free. I decided to commit to a healthier lifestyle in hopes that my psoriasis would diminish, which was difficult due to my large sweet tooth. This has taught me that I am willing to sacrifice for the future of my skin, and that the sacrifices are worth the victories in the end. I continue to live by this in school, as I know that there will have to be sacrifices made in order to pursue my nursing career. I use it as motivation rather than discouragement.”
“My education is something that I value deeply. I am lucky to have been able to receive the education that I have today. I also look forward to my future education goals once I finish my bachelor's degree. My decision to major in nursing was influenced by my HS diagnosis. I wanted to learn more about HS, as well as the plethora of other illnesses that people suffer from. I want to learn this so one day, I could be a blessing to others and provide the care that they truly need and deserve. I have suffered from multiple health issues in the past, so I know what it is like to need an advocate for my health. My goal with the education and degree that I will receive is to provide the best possible care for my future patients and to be an advocate for their needs, especially if they seem difficult to obtain. If I were to receive this scholarship, it would mean so much to me, more than words can describe. This scholarship would also provide the opportunity for me to be able to finish my bachelor's degree, knowing that what I am doing has the support of others. By receiving this scholarship, this would give me extra motivation to keep pushing through school, even when my health is suffering immensely. I know what it is like to be a patient and be receiving care from others, but I cannot wait until I am the nurse and I am the one who is able to provide the best care for those who truly need help. If I were awarded this scholarship, I would be able to look into obtaining a masters degree, and possibly my doctorate degree. I hope that one day, I can become a nurse practitioner or become a college professor in a school of nursing. All of the career paths that are available to me are enticing because no matter what specific career in nursing I choose, I get to teach in some capacity. Nurses are known to help heal others, but it is also a career that provides a lot of education. Through the education that I receive in school, I can then pour into future nurses and patients.”
“Psoriasis has transformed my world into an outlet of newfound gratitude. Since I was diagnosed with eczema as a newborn, and then psoriasis at 12, I remember constantly feeling discouraged because my skin would flare up no matter what I did. It felt like I was experiencing a never-ending cycle of hatred from the world; almost no one wanted to spend time with me because they were afraid they’d be infected. Later on, however, I made the conscious decision that I would not live in misery just because my skin isn’t perfect. I’ve learned how society is quick to form unjust opinions of others based on surface-level assets. Beauty is not exclusively external; the constant reinforcement of my true friends and family have taught me that. Although I still can’t wear the clothes I want or go outside in certain weather, I will not let that hinder my gratitude. I have become more aware of how fortunate I am to participate in all of my activities. I am alive, I can breathe, I am loved, I can walk and talk, and I will never take any of that for granted. As I pursue a career in pharmaceutical studies, I will use my knowledge to counsel families about the many medicinal options to combat devastating diseases. I want to exemplify to people coping with an illness that it is possible to prevail despite the * indicates required information Application Report - ABBVIE (CS) Scholarship Application Page 126 of 362 1/31/2022 8:48 AM 2022 AbbVie Immunology Scholarship 1175710 magnitude of their circumstances. Having psoriasis is a blessing in disguise. I have learned a lot about myself, and I am more aware of the world around me. After experiencing the crushing weight of prejudice, I will never again form an opinion about someone without genuinely getting to know their story first, because everyone is fighting hidden battles.”
“Being a kid with arthritis most definitely makes my life stray a tad from the norm but I make it work. When I was 11 my joints started aching a little and simultaneously I had a bullseye rash. As you might assume, putting two and two together, I had Lyme’s. Wrong. Countless doctors, tests, second opinions later proved I was negative for the disease. One doctor had mentioned JIA, but that went right over our heads, because what kind of 11 year old has arthritis, right? Turns out I did have the autoimmune disorder. So, yes, I have JIA, but that’s not who I am. My arthritis is my greatest enemy, but also my greatest support. It’s allowed me to grow into the strong young person I am today. Aside from the occasional, raging midnight inflammation, the mornings are usually the cruelest parts of the day. Heating pads, 6AM baths, massages, and so many other methods were tried and failed. But then I discovered yoga. Movement cures, I realized. From then on it became essential to my mornings. Running has also been a huge part of my life for as long as I can remember. Introduced to track at age 4, my running career really jump started due to the ups and downs of my JIA. Movement is key; it distracts the body from pain. I would get outside and just run to relieve my pain. It’s routine now, and it benefits me in more ways than just relieving my arthritis. I run to ease my mind, my stress, anger, pretty much everything. Looking back, it was all a growing process. From flinching at the sight of a needle to giving myself weekly injections. I prospered through experiences of dread and unknowingness, but, all in all, growth has always been the outcome. And for that I thank my arthritis. The resilience and determination I have gained from having this disease has shown me how to go about life with an open mind and an ability to overcome anything. This ambition is the key to who I am today and I believe it will continue to support me wherever I go, and for whatever degree I achieve.”
“'We are not retreating. We are advancing in another direction.' — —General Douglas MacArthur Since I was six years old, I’ve loved athletics. I counted down the years until I could play for my school in 7th grade. However, two months before the season started, I woke up to swollen, stiff hands and feet. I couldn’t catch, tie my shoes, or barely walk. I was diagnosed with a severe case of JIA which was later determined to be Ankylosing Spondylitis. I distinctly remember sitting in the doctor’s office, just 12 years old, tears rolling down my cheeks, as I heard what I did not want to hear. This lifelong disease tore me from something I dearly loved. Athletics became completely out of the question, and my life would never be the same. However, as MacArthur remarked, I didn’t retreat - I chose to advance in another direction. I became a swimmer, met my best friends on the swim team, and was voted captain of my high school team. The friends I made in this sport introduced me to computer coding, which became my passion. I’ve published 4 free apps that have a combined 5000+ downloads, and I’ve started my own LLC for my coding projects. I’m studying computer science with a minor in business at the University, and I intend to become an entrepreneur in the technology field. Living with AS has taught me to pivot and that life can be amazing when a challenge pushes me in another direction. Just like a swimming flip turn, I hit a wall, turned, and advanced the other way. I’ve learned that the challenges in life shape who we ultimately become and that life would be boring without these adversities. AS did not drown me in pity; it propelled me to a new goal and taught me to be adaptable. Likewise, I am approaching the rigors of college CS courses with resilience. I am thankful for this obstacle in my life. All the injections, the blood draws, and the doctor’s appointments do not define me, but they are part of my journey and will continue to refine me. ”
“I was diagnosed with psoriasis by age five. Most people who suffer from psoriasis do not show any symptoms until much later in life. I was covered in little red, flakey, itchy spots by age six. Psoriasis, an autoimmune disease, can cause major skin problems, but it can also affect your joints, organs, and in my case, my throat. During my freshmen year of high school, I started to get psoriasis on my face. At this point, there was no hiding it under long-sleeve shirts and pants. I felt ashamed, embarrassed, and my peers even outcasted me because of my condition. A child at school started a rumor that I had herpes, and it spread like wildfire. I was horrified and truly wanted to quit school and hide from everyone. I cried myself to sleep every night. Eventually, something shifted in me. Instead of being embarrassed about my condition, I decided to educate my classmates about psoriasis, and that is precisely what I did! When people asked what was on my face, I explained that it was psoriasis, genetic, and usually triggered by stress. I even wrote a paper on psoriasis and presented it in front of my class. My teacher was so impressed that the teacher recommended me and my presentation to our school district’s Techno Expo. I have grown a lot from this experience. I have taken charge of my condition and I own it. I do not shy away from the questions and comments or try to hide my condition anymore. It is part of me and always will be. In fact, I believe it has made me a better person because I know that being a wonderful person is not skin deep but comes from within. It has helped me see past people’s physical appearances and see them for who they truly are. Next fall, I plan to attend the University and major in Exercise Health Science. After earning my bachelor’s degree, I plan to enroll in a Physician Assistant program specializing in Dermatology. I hope to help others who are dealing with psoriasis.”
“At 12 years old I was diagnosed with Fistulizing Crohn’s disease. I spent 14 days in the hospital, receiving IV medication and nutrition through a PICC line. Once discharged, my fight was not over. After my initial hospitalization I gained 40 lbs, a puffy face from steroids and a temporary feeding tube. As I got older I struggled with medication failure, which ultimately led me to enrolling in a clinical trial. The two biggest things I struggled with was the fear of the unknown and the curiosity that was instilled in friends and family. With time I learned that my disease did not have to define me and I had a support system that refused to let me succumb to the challenges it presented. My disease has become a part of who I am and has taught me strength, empathy and perseverance. I now advocate for my condition by getting involved with the Crohn’s and Colitis Foundation. Young children in my local community have reached out to me, asking how I find the right balance between my health, school, sports and my social life, and I offer as much insight as I can. I tell my story to capture the reality of what a difficult diagnosis means for someone at a young age, but also how it is very much possible to overcome the obstacles a health challenge may present. I am a 22 year old person who dealt with a chronic illness, all while being a full time student, a Division 1 athlete, working a part time job, tackling multiple internships and make time for social life. In addition, my knowledge and understanding of my condition and many similar have led to me pursuing a career as a Physician Assistant. I don’t think anyone could have braced me for the difficulties that accompanied failed therapies, the frustrations when I had to miss out on social events because of surgeries or the advocate I had to learn to be for myself. The reality is I deal with a chronic illness, and although it has threatened to take over my life, I do not let it.”
“To me, the most difficult aspect of living with an invisible illness is that it’s up to me to vocalize my pain and seek support. Growing up with a single parent who suffered from severe depression and younger siblings who needed a stable parental figure, I didn’t get much practice asking for support. I was about 18 years old when my wrists started to ache, but with my parent and siblings to worry about, I brushed off the pain as a snowboarding injury that would probably go away. Once the pain spread to my fingers and exacerbated to the point of needing both hands to lift a glass of water, I finally sought help and was diagnosed with Rheumatoid Arthritis. My relief from getting an answer quickly turned to anguish as I realized this was a lifelong sentence to pain, expensive medical bills, harsh medications, and lifestyle changes that involved minimizing stress that was out of my control. My rheumatologist was the first person I ever spoke to about my situation at home. The doctor's kindness and empathy in treating my physical pain made me feel safe talking to him/her about my emotional pain. The doctor found me support groups and therapists that were critical in helping me through my diagnosis, and eventually through the tragedy of losing my parent to suicide on August 1, 2021. Losing a parent is very public in nature, and most certainly not invisible. The outpouring of support I received after losing my parent showed me the beauty of ‘invisible’ illnesses becoming visible. My experience brought so much depth to the saying “everyone you meet is fighting a battle you know nothing about. Be kind.” As a medical student and aspiring rheumatologist, I strive to bring my invisible illness to light to help educate my classmates on living with a chronic inflammatory disease. The experiences I’ve had will absolutely shape the type of physician I will become and the level of empathy I’m capable of. I will strive to do for my patients what my rheumatologist did for me.”
“I was a motivated, hardworking young child. I loved athletics and I was good at it. I started waterskiing at the age of 2, and ever since I can remember, my dream was to be a world record holder and world champion. I worked towards that goal everyday after school with my dad, no matter what. In 2016, I decided I was going to do cross country. I was already taking AP classes and was on track to break the world record that fall. For me, I thought cross country was good cross-training for my skiing, and it was. I broke the world record in September of 2016. I got compliments like “I don’t know how you do it all” or “you are incredible for your age.” These words of affirmation made me feel good about what I was doing. However, little did I know what I was putting my body through. I was getting 6 hours of sleep every night only to wake up at 4 am and run 5-10 miles, go to school all day, ski, and then do homework until I finally passed out. I developed boils on my skin that led me to feel self-conscious in a bathing suit and be in extreme pain when I ran. I pushed through though, wanting to show others that I could do it all, until I finally couldn’t. I broke down, my body was worn out, and mentally I couldn’t handle it. After many doctors, a Functional Medicine doctor diagnosed me and put me on a strict diet for 60 days. This is when I determined that inflammatory foods and my lifestyle were driving my body into overload. I learned a lot about myself through this process. I now know I need 8 hours of sleep to function, eating inflammatory foods fuels my HS, and slowing down can be good. Today I am pain free, halfway through nursing school, a 2x World Record Holder, and 3x World Champion. My goal is to be a nurse practitioner and to help others with HS feel that they aren’t alone and that healing is possible. Applying these tools to my life has allowed me to continue to be successful as well as be healthy, and I am happier because of it.”
“As a member of the Boy Scouts of America program, scouting has inspired and empowered me to be a positive changemaker in my community. As a Senior Leader in the program, I fostered a strong sense of community for our members while also spearheading our troop’s efforts to help our local community. Throughout the entirety of my scouting career, I led or contributed to over 100 community service projects. These projects include creating and distributing meal baskets for families in need, participating in companion programs for individuals with special needs, and building training equipment for a service animal non-profit supporting local veterans. For my highest advancement Service Project, I organized and executed a plan to establish sustainable supply banks at three local middle schools in need. Not only did each of these experiences directly benefit my community and promote a culture of being there for one’s neighbor, but they also afforded me opportunities to build a toolkit of leadership, collaboration, and communication skills I know that I can utilize to continue being a force for good in any environment. In serving my community, the connections I have forged with amazing people along the way fill these endeavors with even more personal meaning and significance. There is an indescribable joy in meeting and supporting the efforts of passionate teachers dedicated to improving their students’ quality of education, parents working tirelessly to improve the lives of kids with developmental disorders, and community members coming together to eliminate food insecurity. Growing up in a rather large city, I never experienced the textbook small-town sense of community. However, meeting incredible people through community service, working in team environments to better my community, and seeing the happiness our efforts brought into the lives of my fellow community members provided a stronger sense of community unity and fulfillment than I could have ever imagined.”
“As an actor and a person who has grown up with social media, I have been conditioned to believe that my appearance impacts my ability to be liked, to be cast in roles, to fit the idea for a character. Since age seven, I have tried to hide my face’s flakiness, the red spots on my stomach and arms, the constant itchiness. I used to cry, looking into the mirror, every time my mom complained about how my skin would look bad for an audition, each time I couldn't focus in class, or it took me hours to fall asleep because of itchiness. Psoriasis has brought every ounce of frustration - from the bleeding, stinging flares, to being medicated with three immunosuppressants. These drugs have ended in fatigue, fevers, and strict eating regimens when I stopped taking them. But as much as psoriasis has taken physically, mentally, financially from me, I am confident I have been able to take something back. Psoriasis has opened my eyes to the unique human flaws that each individual faces. I have learned that beauty and strength comes from within, and these imperfections make me real and vulnerable. This realization has taught me that actors must bring personal experiences to our work, in order to humanize our art. I have also begun writing plays, and I am writing my first screenplay, so I will strive to write about characters who struggle with self-image and skin disorders. I will bring my vulnerable experience with this autoimmune disease to my acting, helping me connect to emotions of insecurity and self-consciousness in characters that I play. Most importantly, I will carry the knowledge that my skin disorder does not define me, and I will maintain that confidence as I enter an industry that can feel appearance-based. I first began acting because it allowed me to explore natural emotion and to impact others through storytelling. Psoriasis has clarified my purpose in bringing vulnerability to my work and experiencing acting as an art, not something defined by appearance.”
“Oxford University estimates a rough total of 171,146 words in the English language, and a nearly infinite number of ways to acceptably arrange them. Yet, only one word comes to mind when I reflect on living with a chronic illness: transformative. Since being diagnosed with Crohn's at the age of nine, I've gained countless invaluable life lessons; most notably being a sense of independence. You see, while my fourth-grade peers kept busy wondering what game they might play at recess, I was busy scheduling doctor's appointments, dosing pills for the week, and filling out paperwork, among other things. While seemingly unimportant, these small tasks set in motion a person who'd become regimented, responsible, and extremely dedicated. In addition to finding my independence, Crohn's has also dramatically shifted my perspective on life. I'll never forget walking out of my hospital room before my first colonoscopy and seeing kids my age, clearly much sicker than I was at the time, yet unbelievably happy. Despite the world feeling like it was crashing down around me, seeing these warriors made me stop and appreciate life in a way I had not before. For the first time, I was able to put myself in the shoes of another person, not only to regulate my own emotion but to develop compassion. Although I'm unsure of exactly what career path I want to pursue, I have dreams of working as a management consultant and later founding my own startup company, assuming my consulting experience leads me in that direction. Regardless of if this dream becomes a reality, the independence and sense of empathy I've gained from Crohn's will undoubtedly aid in my success. No matter the career, being able to effectively work with others while properly managing individual tasks is vital. Thus, taking all of this into account, Crohn's may not have much appeal on paper, but when I look at the way it transformed me and continues to impact my life, I wouldn't trade it for the world.”
“There are perhaps no two sounds more diametrically opposed than the beeping of an IV pump and the roaring of a crowd at a high school football game. Yet, I could hear both as I watched the stream of our school's first home game from my bed at hospital. I had just been diagnosed with Crohn's and the severe inflammation required a three day hospital stay. This isn't how I imagined my senior year would begin, but when I left the hospital armed with medication and a plan for the future, I knew that it would change how it continued. Adjusting to my diagnosis and focusing on my recovery coincided with clubs and AP courses as I attempted a return to normal. I was determined that my illness wouldn't prevent me from pursuing my goal of becoming a veterinarian. My passion for veterinary medicine had recently extended to research after I completed my AP Research project analyzing ivermectin efficacy on small strongyles. I found my passion for research and diagnosis had an overlap: interdisciplinary research exploring the intersection of human and animal medicine. This interest was sparked by my gastroenterologist who said her cat also has a form of IBD and takes the same medicine. My curiosity was piqued about how researching multi-species illnesses could improve the quality of life of each species. Because of Crohn's, I'm aware of how struggling with a chronic illness can affect one's life and worldview. Yet, because of my passion for veterinary medicine and research, I have a scientific outlook. I know that my research could allow me to find how diseases could be cured similarly in humans and animals. I would also like to utilize the power of leadership among diverse students to create support groups for college students who are facing the adversities of managing chronic illnesses while navigating the challenges of college life. As 20 is a common onset age for chronic illnesses, support groups like these could be integral in successful campus life.”
“When one person in a community doesn't feel strong enough to carry their suffering, another person is ready to step in and bear it with them. This is the essence of community, what makes it such an important part of living with a chronic illness. I had no idea how much my world would change when I was diagnosed with Crohn's disease. It was more than the doctor visits, tube feeds, and hospital stays. The hardest parts of my diagnosis were the dark and scary unknowns that accompany a diagnosis with no cure. It was the isolation of living with an invisible illness and the questions like "why me?" or "what next?" that caught me off guard. Lastly, it was the loneliness of not knowing other people who were asking the same questions I was asking. I joined the ImproveCareNow (ICN) Patient Advisory Council (PAC) roughly six months after my diagnosis. Words fail to describe how pivotal this decision was. At the time, I was struggling to live with my disease. What I found in the PAC was a group of people asking the same questions I was asking. They looked at 13-year-old me, saw the pain I was experiencing, and listened. They did not shy away from my grief or try to cover up my frustration with pretty words. When I didn't feel strong enough to carry my suffering, these people stepped in and carried it with me. What I found in the PAC was more than a support group–it was a community. Today, as pursue a career in nursing, I think about the experiences I've had as a patient. I think about the importance of patient-centered care and the significance of clinical excellence. But most of all, I think of the importance of community. Because of communities like ICN, when I was at my lowest, I had friends who pushed on with me. Now, I study nursing so I can push on for the person who doesn't feel like they have the strength to keep fighting. I know what it is like to be that person. But I also know something now that I didn't know when I was 13 years old: I know that there is hope.”
“The most important lesson I learned is to never give up. Blurry vision, fatigue, stiffening joints, and a great deal of swelling consumed my life. In May of 2016, juvenile arthritis forced me to need a wheelchair, and uveitis demanded the use of sunglasses indoors. Soon after, my doctors started me on a new medication that would improve my life for a short period but would not be an overall success. The first new medication I was on made almost all my swelling go away. I took this as an opportunity and did not take anything for granted. I went back to my daily activities and began to push myself harder in sports. I knew how it felt to have ordinary skills such as walking or seeing be taken away. I lost my ability to walk and see again, but with my second medication, which was a trial of infusions, I would return to feeling like myself. I don’t let JRA hold me back from pursuing my goals and dreams. My current goal includes obtaining a bachelor’s degree in information systems as well as finishing my private pilot’s license. I have a great interest in the aviation field but due to my autoimmune disease business is a necessary back up plan. This does not by any means entail I am giving up my dreams. I have learned anything is possible with perseverance. I have had to go through countless hours of eye exams and dilations to make sure I am safe to fly. Through all of this I have managed to keep flying. I am currently one flight away from becoming endorsed to take my oral check ride. As for Information systems, I have fallen in love with technology and programing. I am appreciative I was forced to choose a backup plan due to my health, because I may not have started programming. Furthermore, I am one of the fifty thousand children in the US afflicted by this autoimmune disease. I will continue to advocate, so people understand what JRA is, and a cure can be discovered. I choose to keep pushing forward because no matter what I know I can’t give up.”
“Dear Crohn's disease, What a beast you have been. I wish I could say I miss you, but even when I don't feel you present I am constantly reminded of you. It is impossible to imagine my life without you. For a while I resented you; you forced me to grow up too quickly. Why at 10 did I have to ask my doctor about my WBC count? Why at 20 did I have to drive myself to the ER to receive an emergency surgery? Why at 26 am I still in squabbles with insurance for medication? As we have grown, I have gained perspective. It can be easy to go down a rabbit hole of self-pity, however I have come to accept we are in this journey together. You have taught me responsibility. When I rebelled against you, I learned that actions have direct consequences. You have taught me to persevere. Originally, I did not believe a "normal" life was possible. However, I have met other patients who provide resources, support, and hope. I have learned that an education is within reach if I put my health first and learn to accept help. You have taught me to be a leader. As a counselor at Camp, I have been able to empower and inspire youth with the same hopes I desired. You have taught me to be a community member. I have learned how important it is to not only offer help, but also accept it from those who surround me. Most importantly, you have taught me to be an advocate. I know how to stand up for myself, for my campers, and for my community. As I continue this journey in school to become a health care practitioner, I hope to use my insights to elevate the voices of my patients. Growing up with a chronic disease is difficult, but I will share my growth and learning with others so they don't have to experience the hardship alone. I am lucky I did not have to go through my experience with you alone. Crohn's, you put up a tough fight. Thankfully, the support I had helped me grow bigger than you. I am thankful for you because you put me in a position where I can inspire positive change. Warmly, The student I met The student 8 years ago at Camp where we both volunteer as camp counselors and The Student has since become a dear friend and someone I think incredibly highly of. The Student is someone our entire camp community and group of mutual friends looks to as an example of not only a great camp counselor, but also an exceptional human being who embodies creativity, positivity, determination, kindness, and selflessness. Through their varied involvement within the IBD community as well as other activities and causes The Student is passionate about and involved in, including but certainly not limited to environmental sustainability and disparities in access to healthcare and education, The student regularly displays how and why The Student is a role model and inspiration to individuals The Student meets, including myself. As previously mentioned, The student and I have served as volunteers for at the Camp as camp counselors for several years. This Camp services children from the ages of 7-17 and provides a safe, inclusive environment for them to meet others who share their diagnosis. We build a community where kids can have a chance to be themselves, have fun, and feel like regular kids during the week of camp. In this capacity, I have seen The student work firsthand with various age groups and witness the close relationships The Student quickly develops with their campers and cocounselors. The Student is always willing to go the extra mile to make someone smile, feel welcomed, included, and truly fosters the environment Camp aims to create. Unfortunately, due to COVID-19, this Camp has not been able to be in person in 2020 and 2021, however The student has continued to serve as a volunteer member of the team that worked in transitioning camp programming online. The Student has also co-facilitated leadership retreats for young adults (17-20) with IBD, to help them learn advocacy skills as they transition into adult care. In addition to this Camp, The Student is involved with a Foundation through Team Challenge. Despite their challenges with IBD, The student has run four half marathons – one of which they signed up for only a few months after a major IBD related surgery – and has raised a total of over $35,000 for the Foundation. Additionally, The Student serves as a fundraising mentor for new Team Challenge participants helping them raise more funds towards the Foundation’s mission. While The student’s inspiring and impactful involvement with the Foundation speaks to how The Student is a role model in the IBD community, their other achievements and experiences as a student further demonstrates why The Student is a role model and inspiration to many others. As a student at College, The student impressively came in second place at College's Health Hacks where they and their team designed a curriculum for medical students to help them build skills to address social determinants of health in their practice. The Student is a Design Day representative and works with the current capstone student to help meet client’s needs and assists in planning future Design Days, and The Student serves as co-chair for COTAD (Coalition of Occupational Therapy Advocates for Diversity), where The Student works on planning events to help practitioners to develop skills to lead a diverse and accepting practice. As if that wasn’t enough, The student was also chosen to be on the HOMBRE team and will be traveling abroad in the summer of 2022 to provide care on an interdisciplinary team. It’s not only in their involvement as a Foundation volunteer and as a student at College that The student has shown how The student takes action on what The student values, but also in their varied work experience. The student currently works as a live-in caretaker for an adult with autism. As such, The student prepares meals, prepares medication, and provides transportation for their client. Their goal is to help their client build skills so they can live independently. Simultaneously, The student works as a chess coach and travels to different middle and elementary schools to teach chess to at-risk youth. Prior to this, The student was an Americorp Park Ranger where they created education programs to teach visitors about the natural world. While at this job, they won a scholarship competition from the National Association for Interpretation for being an outstanding volunteer in the interpretation field. Even earlier in their varied career of service, The student was an Americorp Education Fellow who provided math interventions in one-on-one or small group settings at a charter school with the goal of helping minimize the achievement gap that exists between White and LatinX students. Also at Americorp, they worked on habitat restoration in Redwood National and State Forest. Side note – The student also volunteered as a Special Olympics Coach while completing their undergraduate work, completing over 1,000 hours of community service. The student’s experiences as a dedicated volunteer of the Foundation, exceptional student at College, and impact driven career of service are all quite impressive and shows how throughout their life The student has embodied those characteristics first used to describes them in the opening of this letter - creativity, positivity, determination, kindness, and selflessness. However, I want to add more color and summarize who The student is as a person, why I highly recommend them, and further state what makes them a role model for others in the IBD community. IBD is chronic, painful, and often life-altering. IBD has no known cure, is often unpredictable, and the course of disease can be debilitating, resulting in physical, emotional, and psychosocial impact on patients. IBD patients and their loved ones have unique concerns and needs. Many patients suffer in silence, feeling isolated and alone. That said, The student’s experiences, actions, and who The student is as an individual creates a shining example of hope and inspiration for the IBD community. Throughout their life The student has continued to evolve into the service leader The student is today. In the years I’ve known them, The student has shown determination in overcoming their IBD and countless other obstacles – never shying away from new challenges and doing so while thriving and never losing sight of their desire to truly make a difference and have a positive impact in this world. The student is always smiling through adversity, maintaining a creative, determined, and positive spirit. The student’s campers and so many other youths Students that this applicant has worked with look to them as a role model, and I will reiterate how The student is considered an exceptional human being to anyone who is fortunate enough to get to know them. The student has built a caring support system and community through their actions and experiences. Their smile and creative energy are contagious to those around them, elevating activities, and individuals The student interacts with as demonstrated by their achievements. The student has always been someone who acts with intention with the goal always being to help people and have a positive impact on the world and those around them, demonstrating their kind and selfless nature. What The student has accomplished and demonstrated in all aspects of their life show why The student is a role model for the IBD community. Despite the varied and unpredictable challenges associated with their IBD journey, The student inspires others by their own example that challenges can be overcome, regardless of what someone may be going through that they are not alone and there is a community of support, and that there is hope that one can live a fulfilling life. This scholarship would enable The student to grow further, make a greater impact, and continue to be the truly shining role model and individual that The student is. Thank you for considering The student for this opportunity, and I hope I have communicated why The student is so exceptional and deserving. Sincerely,”
“The curtain rose, then I heard my cue and leapt. As a ballerina, years of rehearsals rendered me able to leap into splits and spin atop my toes. I envisioned myself as the White Swan, a hallmark of classical ballet, the character of a girl trapped in the body of a swan who dances to reveal her true nature. I too, felt trapped behind a deceiving exterior: in contrast to the perfection demanded in ballet, my skin was covered with red, scaly plaques—a painful symptom of my psoriasis.
Born with an autoimmune disease and stigmatized from childhood by the rash that covered my entire body, I was visibly different from my peers. At school, I was bullied; at ballet rehearsals, partners refused to dance with me. While my body has been my greatest struggle, it is also my means of finding good in the bad, of taking the unaesthetic and creating a form of art. Psoriasis taught me that beauty is found in virtue and merit, and not in flawless skin. You create the person you want to be, and that doesn’t have to fit into the confinements of a diagnosis.
Now a medical student, it is my goal to see that people of varying health, appearances, and abilities be treated with the same respect that is given their disease-free peers. To this end, I’ve spent a decade volunteering with the National Psoriasis Foundation on multiple initiatives. I trained as a patient mentor and connected online with patients worldwide, offering support through emotional solidarity. I traveled to Capitol Hill and met with my legislative representatives to educate them about psoriatic disease and encourage them to support inclusive health policies. At Stanford, I serve on the board of Medical Students with Disability and Chronic Illness, where we advocate for more inclusion within healthcare settings.
Psoriasis doesn’t define my life, but the journey it has led me on might. Whether I’m wearing a white tutu or a white coat, I draw on my experiences to train with perseverance and perform with passion.”
“As someone who has lived with Crohn's disease since the age of 7, and who was diagnosed with Hidradenitis suppurativa in the past few years, I have lived a life different from many of my peers and have subsequently viewed the world in a different way. I remember spending many of my own birthday parties feeling sick and crying in pain while my friends were outside playing, in addition to postponing exams and travel due to feeling ill. Because of these experiences with my inflammatory diseases, I have learned that sometimes you must persevere through adversity to achieve your goals and that it takes a lot of resilience to be successful; all the while learning the importance of rest, self-care, and community. Paying special mind to these aspects of life can help keep you sane and healthy and are just as, if not more, important than completing a task. I have also learned that life is truly a balance and that tipping the scale too much can push you over the edge and impact your health and overall well-being. I sincerely believe that my experiences with my inflammatory diseases have impacted me in a number of ways throughout my life and will continue to do so into the future. My time spent in the hospital as a child due to Crohn's disease is the main reason I have chosen to pursue a career in nursing. The nurses that I encountered undoubtedly made my experiences much more bearable and I hope to do the same for children and families in similar situations. I am confident that the lessons I have learned from dealing with my diseases have equipped me to better handle the draining, taxing, and timeconsuming experiences that I will encounter. My diseases have taught me that you can't pour from an empty cup and I plan to find many ways to get filled up in school, work, and life so I can pour into others the way my nurses poured into me.”
“My 8-year UC journey is described below: >Failure of 6 drug interventions >Removal of my colon via 3 operations and the temporary use of an ostomy bag >7, not 3, operations due to a flawed surgery in the first series >Missing 225 days of school from the above UC forced me to grapple with myself and my expectations for my future. It was reasonable to withdraw, be bitter, and resentful due to my situation; however, I knew these were life long decisions and implications. As a result of my UC journey, I have these 4 personal learnings: I'm NOT A QUITTER. My UC put me behind in academics and one approach was to casually work back on track with C type grades. This was unacceptable and I graduated in June 2021 with a 4.0 GPA in a math/science concentration. While surgeries impacted the sport season, I did participate in sport2 and sport3. A POSITIVE ATTITUDE was my next learning. With UC bringing negative thoughts, I was able to look beyond UC and emulate how I wanted to be seen by others. My glass is more than half full and being elected President of my high school class each year is a result of my positive attitude. Being COMPASSIONATE for others is another outcome. Without UC, I wouldn't have become as sensitive and understanding of other people's problems and issues. I wouldn't have understood that there are 11.4 million UC sufferers in the US. My PERSONAL DRIVE/FOCUS is my last learning. Living with UC motivated me to advocate for further understanding, research, and a cure for UC. To raise funds for the C&C Foundation, I sold T-shirts that read "No Colon, Still Rollin" and contributed $25,300 from this effort. I am driven to become a pediatric colorectal surgeon to help kids avoid the issues that I dealt with. Looking forward, I will use these valuable lessons from my UC journey to make a meaningful impact in the medical field. I feel that these attributes will serve me well during the pursuit of a medical degree since I certainly understand the patient side.”
“I hate my guts … well at least the guts that have been removed from inside me. Being diagnosed with Crohn's disease (CD) at the age of 13 jumpstarted my aspiration to become a doctor and help pediatric patients with similar experiences. My diagnosis exposed me to the power of trusting those who want to help you. After weeklong overnight stays in the hospital, my fascination with the innumerable professionals and futuristic technologies in the field of IBD inspired me to volunteer doing clinical research and shadow gastroenterologists. While shadowing, I noticed a disconnect between the amount of information presented and comprehended by pediatric patients. Thinking back to when I was a similar age, I realized how oblivious I was to the severity of the situation. I was always informed of my medical plan, but never felt scared for my life because of the support of my family and doctors, knowing that they were doing everything they could to help me. Having this mindset, I looked at the positive side of things and took advantage of this unique experience. In the hospital, I learned about all the different career paths, education tracks, and research going on in specific fields. I started researching the drugs I was administered, keeping track of dosages and effects. This was when I fell in love with medicine. While shadowing, I used what I learned as a patient to try and understand how each child was reacting to news in patient visits, as well as expand my knowledge on Crohn's Disease. I found the doctors instilling trust with the patient and their families in every visit, with some children identifying it better than others. When the child showed unconditional trust for the healthcare team, a feeling of comfort and even calmness struck the room, where overcoming Crohn's became a destiny instead of a dream. As a future physician, my diagnosis has given me the unique perspective of a pediatric patient and has shown me the importance of establishing unconditional trust.”
“Through my journey with hidradenitis suppurativa, I have learned that my opportunities are limitless. Although feeling lost initially, I have seen the best version of myself through physical, mental, and academic growth. As a passionate sport player, I saw how HS restricted my physical movement, specifically my arm mobility that I fought through postsurgery. The experience of working towards total physical capacity reminded me of how grateful I was to have my body’s basic movements. As I realized HS would be a lifelong battle, my mental health worsened; I was concerned and felt weak that my longterm goals would be hindered. My family could not understand what it meant to be an individual with this illness. I let the struggles I was facing slow me down and not accomplish as much as I wanted. Thankfully, I could see how I could pull myself out of a dark time and become mentally more robust when feeling defeated. When I researched and read success stories on individuals in a similar position, I began to see some hope. I was more motivated to get involved and grow as a driven student in academia. It was not too long before I found myself passionate about the health world after acquiring knowledge on HS and was driven to learn more through a legal lens, hoping to contribute a substantial impact one day as an aspiring health care lawyer. Living with HS gave me a life-changing learning experience and a new insight into what was essential to my life and the type of person I know I can be. I have gained more confidence as a driven individual with aspirations, and I plan to power through my law school journey with the same mindset I have as I power through with Hidradenitis Suppurativa. Similar feelings in different times of my life have prepared me for what I know I can overcome. I learned how much life could change within minutes throughout these times, pushing me to aim for success and happiness continuously.”
“I vividly remember sitting in my blind parent's lap, wheeled in a wheelchair down a long windy hall when I was just three years old. That was the start of my journey with chronic illnesses. My three-year-old self would go through lots of tests and surgeries as I got older. Instead of making me feel sorry for myself, my chronic inflammatory illnesses have made me stronger. Being raised by my blind parent and elderly grandparents meant I had few excuses for not being successful or achieving in life. Though I experienced pain, I had no choice but to persevere. I became involved with the Arthritis Foundation. I first attended summer camps where I made friends with other kids who shared my same challenges. It felt good knowing that there were others out there like me. I also participated in an advocacy program in a major city, with the Arthritis Foundation. I met with Congressional representatives, talking about the challenges of arthritis and the need for better treatments. These events made me feel better and less isolated, knowing that there are others out there experiencing the same challenges. In 2019, I was honored as the City Arthritis Walk's youth honoree. I spent time promoting the walk, gathering sponsors, and raising funds. That process helped me feel more complete. I got to share my experience in a way that positively impacted others. On the day of the walk, I encouraged the audience to smile in the face of adversity. I also started mentoring a student with an inflammatory condition. As I continue through college and life, I remind myself to heed my advice to smile in the face of adversity. My experiences with arthritis and uveitis, though difficult, have made me who I am. They have taught me to find comfort where I can and have propelled me to make a positive difference in the lives of others. As I continue to pursue my degree, I will constantly remind myself that I am stronger than any challenges that I may have.”
“As an individual from a low-income background, I learned early on that community was essential to overcoming difficult times. Being diagnosed with ulcerative colitis (UC) as a teenager added another dimension to my existing challenges as I navigated a new chronic disease diagnosis in conjunction with my ambitions for higher education. When I entered college, I sought communities that allowed me to reciprocate the support I had received and also found communities of people like me. A Crohn's and colitis student group became a community of utmost importance to my personal journey, lending insight on having an "invisible" illness, hosting patient education events, and introducing me to the Crohn's and Colitis Foundation (CCF). I first volunteered with the CCF at a fundraising walk with a goal to increase visibility and awareness of my disease; then I became a counselor for their camp for kids with Crohn's and colitis to help foster a strong community like I had found. I have deepened my involvement, now, as a facilitator of a teen support group and patient reviewer for research grants. My role in the Crohn's and colitis community began as a desire to learn more about my diagnosis but has transformed into one of mentorship and advocacy. This community's impact on my personal journey extends into my professional journey. Though I always aspired to be a powerful communicator and role model, finding an avenue to make research more accessible and be an advocate for patients has become paramount to my role in science. Now, 8 years into my diagnosis with UC and 8 years into my professional research career, the communities that I have been welcomed into since being diagnosed have given me strength, passion, and motivation to use my skills to fulfill a need. As I pursue doctoral training in translational sciences, I aim to investigate intervention and prevention strategies in chronic diseases with the hope that I can contribute to finding cures for my communities.”
“In July of 2020, my life took an unexpected turn that almost affected one of the most consistent things in my life, my education. Diagnosed with Crohn’s disease months before going into pharmacy school, I needed to focus on my health but didn’t want to have to give up on going back to school to do so. I refused to defer a year and took this as a reason to enter pharmacy school. It’s motivated me to become the pharmacist I wish I had by my side when evaluating medications. I followed my passion and didn’t let my Crohn’s disease stop me from becoming who I wanted to be. This scholarship will get me closer to helping those in a similar position understand that a diagnosis is not a punishment. I will encourage my patients’ to not let their disease define who they are and what they do but to take control of their condition and follow their dreams. I have many interests within the pharmaceutical field. This opportunity would make a great impact on me deciding where I would like to end up and let me focus on that path. This scholarship will provide me with more time that I would like to dedicate to exploring these paths and participating in research. This will help me become a well-rounded pharmacist and is something I won’t be able to do without this scholarship. I want to be my patients’ biggest advocate, because I know that’s what I felt I was missing. At times, I felt like my opinion was dismissed within my healthcare team. I want my future patients to feel empowered and included in medical decisions. This scholarship will allow me to focus on becoming the best patient advocate I can be. If chosen as a recipient, it will do so much more than just help me with the financial burden of pharmacy school. It will impact my educational goals and allow me to become involved in research, which would be a top priority of mine. No matter what part of pharmacy I end up in I will strive to become an understanding, optimistic, unbiased, and compassionate caregiver.”
“I was diagnosed with ulcerative colitis (UC) a little over a year ago. In my case, it progressed to a point where surgery was the best option. Currently, I have an ileostomy bag. It's been a whirlwind of emotion, and it's taken time for me to pick up the remains of my broken body and arrange them into a perfect masterpiece. After being diagnosed, I faced the cruelty of the world and I came out smiling. In retrospect, I see how I've grown and flourished as a human. Initially, I was sour and upset that is was me who had to conquer this challenge. Although my body was damaged and my brain bitter, my heart softened and my words became kinder. I found myself wondering what other people were going through; what invisible battles were other people facing? I couldn't see their issues and I found relief in that fact that they couldn't see mine. It was empowering to know that any stranger I come in contact with will never know my story unless I tell it. I also found myself less anxious. After the worst happens, things can only go up. I stopped sweating the small stuff and started living my life that way I wanted. The UC took my life on a detour, and although it wasn't what I had planned, the final destination was more beautiful than I could've fathomed. I'm excited to earn my degree and begin changing my sliver of the world. Living life with a chronic illness has gifted me unique life lessons. By not assuming anyone's hardships, I'm kinder and more open-minded. The most important skill UC gifted me was the power of handling my stress. I am able to take pressure off myself because my UC has put everything into perspective. At the end of the day, all that matters is that I'm healthy and able to pursue the degree I want to. After I left the hospital, I vowed to never wait for something I wanted, because I learned that I'm not immune to tragedy. Now, I don't let fate decide, I take the reins of life and create the best version of me.”
“I have juvenile idiopathic arthritis, uveitis, glaucoma and a cataract in my left eye. I was diagnosed with JIA at 15 months. My path to a diagnosis involved traveling to numerous doctors, hospitalization for months, and multiple antibiotics and treatments with no clear answers. I stopped walking, talking and eating. By 22 months old, I had glaucoma and a cataract from all the prednisone drops used to pound back the arthritis in my eyes, and I was going blind. A Uveitis expert immediately ordered a goniotomy as well as a promising chemotherapy drug. I began six- hourplus infusions, four times a month. They worked until I experienced anaphylaxis and coded at the Hospital following a reaction to the medication. I am now on weekly medication and am in my freshman year in the Honors College at the University. I am double majoring in Political Science and Philosophy and minoring in History and Psychology. I currently have straight A’s in all courses. I am also working on leadership skills; I was elected to Freshman Forum (student government) and chosen as Director of Service and Philanthropy in my local club. I have volunteered for Al’s Pals (youth literacy), First Year Outreach for my university’s Dance Marathon, and am a school ambassador for athletics games. I will continue volunteering for the Arthritis Foundation supporting this December’s Jingle Bell Run in my city while participating in panels and forums for The Arthritis Foundation and Rheumatoid Awareness. This scholarship will allow me to slow down my pace as I try to not incur debt from college and then on to graduate school. In addition to balancing my health and scholastics, I’d like to explore and experience different opportunities at the University without the worry of what giving up a work shift may cost me. These new experiences will only strengthen my insight and abilities to help advocate for others.”
“JAB! The needle pierced my skin, and blood oozed from my veins into small cylindrical tubes. 'Just ten more seconds.' I sat there, only seven years old, crying from pain, and not sure what felt worse, my bruised arm or my acute stomach pain. Pediatricians from around the world proved unable to diagnose me. My parents feared that my life would end. After multiple colonoscopies, it turns out, I have Crohn's disease. Crohn’s comes with multiple side effects such as intense stomach pain and a weakened immune system. The latter is especially dangerous because for me, the smallest cold can easily mutate into a life-threatening infection. After years of living alongside Crohn's, I was ready to fight back. I found a local organization and instantly fell in love with the community. Everyday, I walked with different people and greatly improved my overall health. I found joy in exercise,and I wanted to inspire others to feel the same. I initially joined to improve my personal health, but by the end, I became a part of something much greater– a community. My experience with FreeWalkers inspired me to volunteer with my town's emergency service. As a volunteer, I assisted paramedics in transporting patients to the emergency room. On my first 911 call, I helped a patient whose heart had stopped beating. The moment I heard the heartbeat, I felt both relieved and proud. The gratitude of the patient’s family members motivates me to continue volunteering and doing what I love to do. There is no cure for Crohn’s. Crohn’s disease has, and will, forever shape my life. However, my perspective has changed as I have grown. What was initially seen as a burden has become a teacher. I was pushed out of my comfort zone, forced to confront my own mortality, and I am now stronger because of it. I appreciate life. Every day is a challenge and a blessing. What started out as a plan to improve my own life, has transformed into a life-long dedication to helping others.”
“In 2001, I was a music major recently diagnosed with RA. My joints torqued with inflammation: I couldn't hold a conductor's baton or stand unassisted to sing an aria. Too proud to admit disability, I pretended everything was fine. In costume, I performed singing 'woe is me' to an audience unaware of the knee braces holding me up under my satin costume. I graduated knowing my days of piano and dance were over. But I could not let illness dictate my path through life, so as one future limped away, I created another. After college, I worked with a nonprofit serving marginalized communities internationally. I tutored in the slums, advocated for homeless families, and used my words to document others' stories and amplify their voices. Those voices taught me that vulnerability is a badge of courage, not shame. They showed me that giving and receiving help builds strong communities, and that my words could make a difference. Writing is my passion. It offers solace and therapy in tough times. Through writing, I can share my 20+ year journey with this disease. From those early years of denial and shame, I've moved to a place of acceptance and advocacy. RA has helped me become a more compassionate, curious person. I can now ask for what I need, offer kindness to myself, and extend that grace to others. Living with chronic disease is tough. No one enjoys being in pain or fatigued. Every time my joints betray me, I get angry. But writing helps channel the anger and overcome the pain. Graduate school is the next step in my journey as a writer. I look forward to immersing myself in craft, honing skills, and learning from experts as I work on projects like a semi-biographical novel featuring a high school student who must rethink future plans after a sudden diagnosis of JRA. My goal is to use the unique perspectives and experiences of a life with RA to bring greater awareness of chronic illnesses into the world of children's literature.”
“Since I was three, I have been battling juvenile idiopathic arthritis. It forced me, very early on, to present not only myself, but also my condition, to adults in a serious, and mature fashion. With each appointment, I had to know how to command the room. There were countless conversations with a number of familiar and unfamiliar doctors and nurses. On demand, I had to access my extensive medical history and any slight changes. I am confident that it was the development of these communication skills that led to my initial interest in joining the DECA business club at my school. Traveling to the DECA competitions afforded me the opportunity to come up with my own business plans, and then later present it to my judge; having to think fast on my feet and still keep my composure always excited me rather than frightened me. When the judges asked surprise questions, I still knew I was ultimately in control and I knew what needed to be done. Composure in doctors appointments, and the confidence it takes to handle business competition, has ultimately led me to pursue a major in business - most likely marketing. My father graduated from the University and has talked for years about what a special place our city is. I got to experience it for myself during two campus visits this summer and fall. Seeing the beauty of the campus drew me in, but the stellar reputation of the School of Business was what ultimately peaked my interest. The well-respected School of Business, can provide me with the best possible resources in accomplishing this goal. I know pursuing a business degree will not be easy, but I am confident in my commitment to time management, teamwork, and my pursuit of making myself and those around me better. I realize that I am not alone in battling this debilitating condition, but I truly believe I’ve turned this negative into a positive. I believe in myself, my grit, my initiative, and I have faith that I can succeed over whatever comes my way.”
“In lower school, everything seemed slightly out of reach to me because of a diagnosis I received when I was only 3 – juvenile rheumatoid arthritis with uveitis. So early in life, it seemed that I wouldn’t be able to participate in a lot of activities as I grew up, but my parents did not accept that. Through the worst times of my arthritis, they encouraged me to keep going and to stay active. They didn’t let arthritis define me or tell me what I could or couldn’t do. They taught me that no matter what the world tells me, I can do whatever I set my mind to. This diagnosis definitely gave me the opportunity to see the world in a unique way compared to other kids. At one point, I had to take eye drops in the middle of the school day as the class lined up for lunch to keep my Uveitis under control. This process taught me to have confidence in myself. It can be unnerving to stand in front of everyone and accept your differences, but I was forced to. Enduring that trial helped me because I can now sing and speak in front of people easier than others can. As I grew older, I began to grow interested in riding horses. It is one of the most important aspects of my life now, but sometimes, arthritis makes it difficult to do this activity. Medicine couldn’t always fix the pain that I felt, but I worked hard for what I wanted and kept pushing to achieve my dreams. Persevering through the pain actually led me to winning first place at a national horse show this year! Having arthritis definitely taught me many lessons that I would not have learned otherwise. From gaining confidence to growing in perseverance, these traits will help me as I pursue a degree in college. I will work hard for what I want and never give up on my dreams, even if the task seems difficult at the time. I’ve learned that pushing through the hard aspects in life can lead to the most fulfilling rewards. I am blessed to have this perspective on life, even if it came from my battle with arthritis.”
“In 2013, I was diagnosed with polyarticular juvenile idiopathic arthritis. At the time, those four words meant nothing to me. However, as time went on I started to notice the ramifications that those four words would bring to my life. The swelling of the joints that made my fingers and ankle look like marshmallows; the feeling of weakness as I couldn't close my fingers enough to open a gallon of milk; and the seemingly endless pain that arthritis brought with it. All of these things were bad enough, but nothing was worse than the feeling of loneliness. During that period, I was the only person I knew that understood what I was going through. In fact, besides my family, I was one of the few people I knew that understood kids could get arthritis. That idea alone was the worst part of this diagnosis. Then, we came across the Arthritis Foundation. I was finally able to meet other people like me suffering from arthritis. As if that wasn't enough; they were all kids. With this new support, I was able to flourish into a newer, better version of myself. I wasn't afraid of my disease nor did I feel lonely. With this new community, we were able to help support one another and talk through any problems we had, and it was at that moment that I realized I could make a difference. I immediately started to open up about my disease. I participated in fundraisers for the Arthritis Foundation, I created my own fundraisers and awareness events, and I became an advocate for arthritis. People can't fix a problem they don't know about, so I made it my personal mission to share my story as much as possible. My gift is my voice to share my story and I have shared my story with fundraising event attendees, my schools, my churches, and with news outlets. It is important that people suffering from diseases such as arthritis get the support they need to thrive, and the only way that is possible is if people are truly aware of the disease. My hope is that I made that impact.”
“I began experiencing symptoms of ulcerative colitis midway through college, and it completely unraveled my reality. The doctors informed me that I will be on medications for life, I will have states of relapse and remission, and it might be difficult to have children. As my symptoms worsened, I began to wonder if I would ever lead a normal life. However, what is incredible about people is our ability to adapt and overcome adversity. I made a conscious decision to accept my circumstances and become more resourceful and resilient. Resourcefulness was key to navigating my symptoms to maintain a social life and succeed academically. I started to plan ahead, anticipate challenges, and I found ways to just make it work. Resilience was something I developed in direct response to my disease – if I wanted to build a better future for myself, I knew I would need to continuously overcome tough situations. The first test of my resilience was finishing my undergraduate studies in chemical engineering. Then, it was tested during another medical condition, and against all odds, I now have an astonishingly healthy child. Currently, I am pursuing my PhD in biomedical sciences and researching the role of different cell types in inflammatory bowel disease. The nature of scientific research requires the same traits that I acquired by living with a chronic condition. Being resourceful and resilient is essential to designing and optimizing experiments, as failure is part of the learning and discovery process. My disease forced me to develop these skills and I exercise them daily in my work as a scientist. Moreover, a notable outcome of living with chronic disease was the empathy that I developed in response to adversity. What fuels my passion for biomedical science is my personal understanding of chronic illness, and I am deeply compelled to further my education and pursue research that will ultimately improve the lives of patients living with inflammatory disease.”
“In my experience with HS, I have discovered how strong I truly am. After the difficulty of many treatment plans, I have learned the skill of self-advocacy. My HS appeared when I was 12, and I let symptoms go on for months untreated as I thought it would just go away. After many doctors’ appointments, I had lost hope that anything would work long term. Then, we found a dermatologist that specializes in HS, and it seemed there was an end in sight. At the recommendation of my doctor, I took an IgG test which showed 116 food allergies. In addition to a new diet, I was on 60 supplements a day. This lasted for 3 months with no change in the number of supplements I took and a loss of 30 lbs. Although this gave me remission from HS, I truly believe this was the worst I have ever felt. It continues to be challenging to weigh the costs and benefits of this treatment. I felt like I was missing out on being 18, and I chose to stop taking the supplements. It was empowering to take my treatment into my own hands, and I didn’t experience a flare up for almost 4 years. Now, a new flare up has begun. I was very disappointed in myself for being back at ‘square one’, but I have come to realize that this is nothing like it was when I began my journey. I have many more tools for coping than I had then. I’ve built a strong support system, and I feel fortunate that I can advocate for myself and how this disease has affected me. In the end, I am thankful that I have had to go through these difficult experiences, as it has only made me a more resilient person. I’ve learned that if I let my shortcomings consume me instead of changing my strategies, I risk losing myself. As a school counselor, I plan to do everything I can to be available to my students, as they deserve to express themselves where they may be heard. I hope that I may help them recognize their own power and show them that they have control over their lives, even in the difficult times.”
“The mythological story of Icarus is a familiar one. The child who flew too close to the sky drops and drowns in the sea as his wax wings melt from his hubris. However, in one of my favorite retellings of this story, W.H. Auden's poem 'Musee des Beaux Arts,' the narrator imagines the perspectives of onlookers to the plummeting Icarus: subconsciously self-centered passerby who could've helped the fallen boy, but were too preoccupied with their own routinely mundane tasks to care. As a patient with juvenile arthritis, I sometimes dramatically imagined myself as Icarus. After seeing me limp in the hallways for the hundredth time, my peers usually turned their heads and ignored it. Sometimes I saw this selective avoidance as a blessing, but more often than not, I wished for some encouragement or just a supportive word. I couldn't criticize them for this, however; I saw myself reflected in their behavior, a frantic, grades-obsessed freshman caught up in the trivialities of my life. Dealing with arthritis, I became infinitely more grateful for the family and friends who saw my struggles. Despite all the medications I took, a red bean reheatable pack hand-sewn by my mom brought the most comfort (and a tasty smell!) during my flares. My closest friends offered to lug my backpack through the hallways when I had to hobble, and others offered over the counter medication and reassurance whenever they could. My disease taught me the importance of compassion over selfishness as I strive to be more understanding of others' untold (but no less important) circumstances. By working with groups like the Arthritis Foundation and simply being more empathetic, I am trying to become the passing farmer that chooses instead to rescue Icarus from the water. I aim to keep this emphasis on empathy as I pursue Comparative Literature to explore stories across cultures and hopefully start my own law practice to help marginalized communities. We are all the passing ships in each others' lives - will we choose to help?”