Beginning on April 2nd, we will be hosting virtual meetings every Thursday at 7 p.m. EST to connect and support young adults within the chronic and rare illness community! Send us a message with your name and email if you would like to join. Registration space is limited, so please let us know as soon as you can. We looking forward to connecting with everyone soon!
COVID-19 Community Resources
Hysteria doesn’t help anyone, but preparation does. During this difficult time, our team member, Madelaine Reis, has compiled a list of resources that may be helpful.
Information Sources
The CDC and WHO are both reliable and up to date resources to follow COVID-19.
For specific questions relating to your health, please contact your care team.
Medical Resources
Multicare is offering FREE e-visits to anyone who has COVID-19 symptoms. Use promo code COVID19 (in the payment section) to waive the regular $25 fee.
This article explains more about social distancing.
Virtual Activities
Yoga: Many yoga studios are offering virtual yoga classes on a sliding scale. We’ve listed a few below, but we recommend checking to see if your local studio is offering any.
Coloring: Open Culture is offering free coloring books from 113 different museums!
Virtual Tours: Many museums, zoos, and aquariums are now offering virtual tours.
This website lists 20 of these activities.
Google Arts & Culture has partnered with over 500 art institutions to virtually open their exhibits to the public.
Libraries: Many libraries are offering books and other media for free online. Check out your local library for more information. NASA has created a free library with over 140,000 photos, videos, activities and other resources for you to see, and even download if you want!
Knitting: Yarns Around the World is holding community zoom calls all about knitting.
Netflix Party: Watch Netflix with your friends while social distancing!
Please note that this is only available on Chrome browsers.
Mental Health
Mental Health Pandemic is a Facebook group created by mental health activist Allilsa Fernandez. It has threads and information around mental health and will be holding virtual meeting almost everyday discussing certain activities and topics.
Laura McKowen will be holding virtual sobriety meetings. Follow her instagram for more information.
The NMD United has a great section in their Preparation Guide for Adults Living with Neuromuscular Disabilities on mental health and activities.
Karolina Kristina is holding daily meditations on her instagram. Click this link for one of her most recent videos.
There are many apps out there that may be useful. We have listed a few below.
National Alliance on Mental Illness (NAMI) has a number of resources. We’ve listed a few below.
Please note that the HelpLine is temporarily unable to answer live phone calls. During this time they will be answering voicemails and emails within 24-48 hours of receipt.
NAMI Crisis Text Line
The Crisis Text Line is open 24/7. Text NAMI to 741741 for immediate assistance.
The Arts
The University of Arizona’s Disability Cultural Center will be hosting a series of virtual poetry performances and open mics. Follow them on instagram for more information.
The Social Distancing Festival was created to help showcase artists whose shows may have been cancelled. Check out their website for more information.
Social Media
Follow Mia Mingus on instagram for more information about community building and organizing around COVID-19.
Follow Dr. Mike on YouTube as he discusses the news surrounding the COVID-19 virus. He is an actively practicing Board Certified Family Medicine doctor in NYC.
Mutual Aid Resources
This document explains what mutual aid is and has tons of great resources for communities, including information about personal preparation, collective care, mutual aid, and advocacy
If you have extra medical supplies or are in need of medical supplies, Walela Nehanda has created this incredible document. You can also reach out to her through twitter to find out other ways you can help.
Some states and regional areas have additional mutual aid resources. You can find out more information on this document that the Health Advocacy Summit has created.
LA Helping Hands is an organization in Los Angeles that is matching high-risk individuals with members of their community who can go out and pick up groceries, prescriptions, and more.
Additional Resources
COVID-19 Community Information Repository
A repository is a central location in which data is stored and managed. This is a repository to store information for communities to share so that we can best support each other.
Please contact Madelaine if you have any questions or ideas for adding resources.
Email: madelaine@healthadvocacysummit.org
Instagram: @mightyymaddyy
COVID-19 Resources for Undocumented Communities
Click here to access a list of national resources by state! Thank you to the Betancourt-Macias Family Scholarship Foundation for creating this list!
International Women's Day: Chronic Illness Inclusion
On this International Women’s Day, we would like to emphasize the importance of the inclusion of chronically ill and disabled women in feminism and why issues such as disability rights, ableism, and gender disparities in the diagnosis and treatment of women with chronic and rare diseases should be seen as feminist issues. Below you will find links to all of the articles featured in “In Sickness,” a series produced by Bitch Media in 2018. This is a powerful series that discusses import issues and resources regarding women’s health, chronic illness, and the challenges faced by women in the medical system. These are issues that we come across all the time at our summits as many of our guests are young women in a constant battle against their own bodies and a system that often makes their struggle even more difficult.
We would like to thank Bitch Media and the following writers who contributed to this important work: Evette Dionne, Kate Horowitz, Mattilda Bernstein Sycamore, Caroline Reilly, Diane Shipley, Alana Kumbier, Sarah Mirk, Paula Kamen, Anna Hamilton, Jen Deerinwater, and illustrator, Panteha Abareshi.
In Sickness
By Evette Dionne
Performance of a Lifetime
On Invisible Illness, Gender, and Disbelief
By Kate Horowitz
A Displaced Body
“Sick” and the Elusive Search for Wellness
By Mattilda Bernstein Sycamore
It’s All In Your Head: The Dangers of Disbelieving Female Pain
By Caroline Reilly
Sick Women
How Women Took Control of Chronic Illness Narratives
By Diane Shipley
Influx of Illness
Will Chronic-Illness Patients Get Their #MeToo Movement?
By Caroline Reilly
Trauma Club
The Chronic Popularity of Illness Lit
By Alana Kumbier
The Mortal Ones
How Young Women Navigate Serious Illnesses
By Evette Dionne
Popaganda: Women and Pain
By Sarah Mirk
No Rest for the (Already) Tired
Feminism Must Center Chronically Ill Women
By Anna Hamilton
Our Bodies, Our Hells
Why Isn’t Pain a Feminist Issue?
By Paula Kamen
The Endo Look
Body Positivity Needs to Tackle Chronic Illness
By Caroline Reilly
Abby Norman on Endometriosis, Healthcare, and the Legacy of Female “Hysteria”
By Evette Dionne
Checkbox Colonization
The Erasure of Indigenous People In Chronic Illness
By Jen Deerinwater
Behind The Scenes
How the “In Sickness” series changed our work
By Bitch HQ
How Doctor-Delayed and Missed Diagnoses Harm Patients With Chronic and Rare Illnesses
By Sydney Reed
It was Christmas Eve in 2010 when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and my mom sleeping on a cot beside me while I stayed up watching “Harry Potter and the Prisoner of Azkaban” on my laptop. After my release, I was referred to my first rheumatologist, who agreed with the diagnosis but insisted I get a muscle biopsy to support it, despite my obvious physical symptoms.
At the time, I didn’t understand why this evidence was necessary and how important it really was.
I couldn’t believe future doctors would actively try to disprove that I ever had JDM. Medicine in general seemed so much simpler then. A person gets sick and the doctor runs some tests which lead to a diagnosis and treatment… right? I had no idea how complicated things could be nor the barrage of delayed and misdiagnoses that awaited me in the years to come.
Multiple Complex Conditions
Like many autoimmune patients, while the physical symptoms I was presenting were classic in cases of JDM, the way my disease presented itself in my blood work was atypical. This is a problem I would confront multiple times over the next several years, and one I would come to realize can have disastrous consequences, resulting in significant delays in the diagnosis and treatment of serious illness.
Since my original diagnosis, I have developed overlapping and secondary conditions such as lupus, Sjögren’s syndrome and postural orthostatic tachycardia syndrome (POTS). This is another commonality among autoimmune diseases: they tend to come in packs.
Most recently, I was diagnosed with a small pituitary tumor. While the tumor itself is not cancerous, it is secreting an abnormal amount of adrenocorticotropic hormone (ACTH), which has resulted in Cushing’s disease, a serious condition that arises from an excess of cortisol in the body. On top of my other conditions, this led to debilitating symptoms that have had a massive impact on the progress I have made in the years since my first diagnosis. These symptoms would take away many of my basic abilities to function and take care of myself, and turned my life upside down all over again.
Here We Go Again
In May of 2018, after two of the best years of my life since my illness began, I suddenly started to experience a long list of new and concerning symptoms.
These included: absent periods, chronic diarrhea, loss of appetite, sudden weight gain, severe headaches, blood clots, dry skin, facial flushing and swelling, abnormal bruising, hair loss, dramatic muscle weakness and pain, and the most extreme fatigue I had yet to experience.
It took a year to find the 3 mm tumor that was the source of all these issues and another eight months after that to convince doctors this was the cause of my symptoms and begin looking at treatment options that could effectively cure my disease and restore my quality of life.
After a second MRI confirmed the existence of a 3 mm pituitary lesion, I was flooded with relief. I never thought I would be so happy to find out I had a tumor. After that, one of the amazing physician assistants at my primary doctor’s office referred me to a local neurosurgeon.
A week went by with no word from the surgeon’s office when I received a message from my primary care doctor explaining that the neurosurgeon had refused to see me and sent the referral back stating, “I don’t see any convincing evidence of a pituitary disorder here… could consider repeating scan in three to four years.” And with that, I was back at square one again, with no answers or relief for my progressively worsening symptoms and a waning degree of hope.
Unfortunately, this is just one example of many in which a doctor disregarded my symptoms and slighted everything I was experiencing. This one-step-forward, two-steps-back progression would continue for months. In total, l saw 13 doctors in my desperate search for answers and, eventually, treatment. Some of them were wonderful, compassionate and supportive. Others were apathetic, dismissive, condescending, and a waste of time and energy I really couldn’t afford.
In just under two years, I spent considerably more time and energy convincing doctors that something was wrong than I did on receiving treatment. Over and over I was told to be patient while I watched myself deteriorate, and as time passed it became increasingly difficult to maintain my resolve in the face of overconfident doctors. I questioned myself countless times throughout this ordeal. I felt ashamed for “doctor shopping” and worried my symptoms were psychosomatic. Thankfully, I haven’t let those moments of doubt and hesitation keep me from pushing forward. I know my body and I knew something was very wrong. I also understood that if I didn’t keep advocating for myself, things would only get worse, and I could lose years of my life and much of the independence and freedom I had worked so hard to achieve in the first place.
It Takes a Toll
While my situation is frustrating and unfortunate, there is a bigger issue at hand here. The fact is I am just one of an overwhelming number of cases in which patients experienced significant delays and misdiagnosis. According to a report on the global challenge of rare disease diagnosis, the average length of time from symptom onset to an accurate diagnosis for rare disease patients is around 4.8 years, during which time patients will see an average of 7.3 physicians before a diagnosis is made. In a 2013 article by Kaiser Health News, patients safety experts reported, “diagnoses that are missed, incorrect or delayed are believed to affect 10 to 20 percent of cases, far exceeding drug errors and surgery on the wrong patient or body part, both of which have received considerably more attention.”
Serious lifelong illness erodes the integrity between your body and your sense of self, but in my experience, receiving a diagnosis, regardless of the severity, is much easier to cope with than the process leading up to it. Going through this diagnostic process is not just exhausting: it’s traumatic. When your concerns are minimized, overlooked, or worse — when you’re told something is simply all in your head — it can cause an immeasurable amount of mental anguish.
Veronique Mead, a former family physician diagnosed with chronic fatigue syndrome (ME/CFS), summarized the factors that contribute to the psychological toll of a chronic illness, “There’s nothing like living with a disease to truly understand what it’s like — the death-like exhaustion that doesn’t improve with rest, the vulnerability, the fear that a symptom might be life-threatening, the sense that you might keep worsening until you actually die and no one will be able to help you, the side effects, the frustration and desperation when nothing works.”
In addition to the psychological toll, the lengthy fight to receive an accurate diagnosis and appropriate care can have tremendous (and sometimes irreversible) physical repercussions. Patient advocate Abbie Cornett writes in an article about doctor-delayed diagnoses, “While awaiting a correct diagnosis, patients frequently experience worsening symptoms, a decline in overall health and even death. These delays not only have physical health implications, but also cause mental health issues such as anxiety, stress, feelings of isolation, worry and depression. What’s worse, they can significantly lower patients’ quality of life compared with patients who have been correctly diagnosed and are receiving proper treatment.”
The Takeaway — for Doctors and Patients
Going through the process to reach an accurate diagnosis and subsequent treatment over and over again is demoralizing and has understandably left me feeling a little jaded. It undermines the trust that is the foundation of the doctor-patient relationship, but while my faith in the medical system has been shaken, as a chronically ill person, I have no choice but to rely on this system (and the people within it) if I want to survive. Literally.
To any doctors who may come across my story, I hope it encourages you to show the same amount of trust and respect to your patients as they bestow onto you. My health has been my full-time job for the better part of 10 years now. It’s what I eat, sleep and breathe. While I may not have a medical degree, I am an expert when it comes to my body and my illness, and this is true for the vast majority of patients I come in contact with these days. Please appreciate the experiences of the people that put their trust in you and do everything in your power to ensure their faith in you is not misplaced.
And to anyone else who is reading this and going through a similar struggle, I hope my experience is proof that you are not alone and encourages you to keep warring on.
In her book, “Surviving and Thriving With an Invisible Chronic Illness,” Ilana Jaqueline writes, “It is your body and your responsibility to treat it with confidence, intelligence and above all, compassion… if you want the most out of life with chronic illness, you’re going to have to fight for it.” I couldn’t agree more with her sentiment. As much as I loathe this diagnostic process with every fiber of my being, the truth is every time I go through it, I get better at it. I get smarter, and stronger, and all the things that are necessary to become the ass-kicking tour de force my life depends on me to be. I’m choosing to fight with everything I have for my place here, for my quality of life, and for all the things I’ve ever wanted for my life and my future.
I hope you will too.
We Have Just Been Awarded a Grant From The Helmsley Charitable Trust!
Our founder Sneha Dave and all of us at the Health Advocacy Summit would like to thank The Helmsley Charitable Trust for providing us with a $60,000 grant to facilitate six Summits across the nation as well as the second year of our international fellowship program, the Crohn's and Colitis Young Adults Network. With their support, we will build lasting support structures to improve the lives of young adults with chronic and rare diseases all over the world. 🌎♥️
From all of us at the Health Advocacy Summit...
We wish you the happiest of holidays and an amazing new year! Let 2020 begin!
My Journey Trying Diets to Treat My Ulcerative Colitis
Desperately trying to avoid a colectomy, one family tried everything from the raw food diet to ditching processed foods.
By Sneha Dave
Sometimes it’s denial that causes unfortunate decisions. Throughout my medical journey, there have been many options for treatment. Soon those options faded, leaving only treatments unapproved by the Food and Drug Administration. These treatments were diets, which we often find appealing because they make us want to look, feel and simply be better. In many cases, diets are necessary – and the one thing that can save an individual from painstaking medical experiences. Hundreds of diets are on the market, and many come with catchy appeals. When a diet can save someone, is it worth a try?
It all began one day when we were running out of allopathic treatment options. I have ulcerative colitis, and my disease was becoming more and more active by the day. Our final option was to get a colectomy (full removal of the colon). This was a defeating option because there is no "colon transplant," so once it's gone, it's gone. My mother called a homeopathic (natural-based healing) office, and thus began our adventure to solve my unsolvable disease. The homeopathic doctor – who I'll call Dr. Smith to preserve her privacy – told us of all her great adventures treating patients and supposedly curing their problems. She was in shock that I hadn't tried diets seriously, and as a result, I was prescribed numerous diets that would hopefully cure my disease, if not put me into remission.
"Sugar," I recall her saying. "This supplemental drink you're having right now has 19 grams of sugar. Sugar is inflammatory, and you'll be regulating your sugar intake with natural sugars only from now on."
I didn't complain because, after years of drinking supplemental drinks, they caused me to have more nausea than a pregnant woman. But then she went on.
"Gluten is also not going to be part of your diet because it will ultimately roll up into a ball and sit in your stomach, and that's not good for your ulcers," Dr. Smith said. "You'll also need to refrain from excessive salt and oil for the next couple months."
My mother was all up for it, and I walked out of the office with my jaw on the ground. I couldn't believe such a diet could even be remotely possible! This experience foreshadowed what was to come in the next couple years. My mother and I went to the nearest nutrition store and bought everything from cardboard to plain plastic and I ate it, simply horrified. So the diet began, and I was craving food I wouldn't have even considered prior to being introduced to the diets. I was on numerous diets at once, but refraining from certain foods was making me feel crazy.
The gluten-free diet was flaky and tasteless, and it nearly brought me to insanity by the end of the second month. Combined with additional restrictions, I lost weight quickly. I didn't have an appetite then anyway, and having to refrain from essential taste-bud pleasers made me choose to skip meals instead. When my weight continued dropping and my health didn't improve, we stopped the diet. We went back to Dr. Smith once more to get her opinion. She talked about a no-processed food diet, which was manageable, although not ideal.
"I will also be prescribing you homeopathic medicine that will help on top of the no-processed food diet," she said convincingly. "You see, processed foods contain chemicals that alter the body system."
We tried it, and unsurprisingly, nothing had happened after a few months. At the same time, I was still on allopathic medications. Unfortunately, my parents and I were in severe denial that I needed to get my colon removed, and we were going to try anything to save it. We stopped going to Dr. Smith, and my mom searched online for anything that could revive my body. She finally came across a renowned raw food diet blog, which ended up leading to a year and a half of pure misery and resentment. The raw food diet is a drastic option that, my mom told me, has brought many people into remission.
At one point, I remember asking, a bit sarcastically, if I could get some real food to eat. "I washed some peaches and plums," my mom said. I ate them, and they were actually really delicious, but then I was presented with steamed sweet potatoes and avocados – and no salt, which prompted my complaints. The next day, I was given fiber-free vegetables and fruits, and they were all in raw forms only. No baking, just steaming or freshly sliced. During this period, my mother frequently found me sneaking in the cabinet to have a gluten-free pretzel or two. We were terrified about what would happen if this diet didn't work.
Eventually, my mom and I went to a health center in California that offered natural-based healing. We made the extreme decision to visit this center because the allopathic treatments had failed me, and there was nothing left to try before the permanent, final option. At the health center, I would eat a simple diet consisting of no salt, sugar or overly cooked items. The facility was mostly based on the raw food diet, but there were also slightly cooked meals for patients like me who couldn't tolerate uncooked vegetables.
Soon after my arrival, while exploring the neighborhood, I remember stealing cookies from an open house because I was so desperate for food.
Every day while I was at the center, the doctor took vitals such as blood pressure and measured my weight. Each day I lost weight, and each day we became increasingly nervous. When I arrived at the health center, I weighed a little over 6o pounds, and by the end of the second week, I was 57 pounds – far too little for a 13-year-old in eighth grade.
The weight loss became a concern for my dad, a doctor, who was trying to monitor my health long distance, as well as my doctor at Riley Hospital for Children, who wasn't overly supportive of this extreme natural food diet but thought it was OK to try. I had to keep myself extremely mentally strong because my body was going through a withdrawal stage of all the chemicals and "bad stuff" in processed foods. But still we continued to wonder – and hope: Was it too late to reverse my disease? Could it even be reversed?
During a class at the center, I remember one physician saying: "No salt. No sugar. No oil. No processing. All natural."
I thought to myself: Do I want to live like this for the rest of my life?
Ultimately, it became clear that the raw food diet wouldn't control my disease, and my mom and I left the health center earlier than expected.
My weight was too low at the time – 57 pounds was beyond unacceptable. Before we headed out of California, we went to a restaurant and I had a buttery, salty grilled cheese sandwich that couldn't have tasted any better.
Trying these diets took two years, but it did give my family a sense of comfort; we knew we had tried everything before deciding to have my colon removed. Plus, we learned a lot about the amount of processed foods that surround us and how natural diets are proven to keep people considerably healthier. Something good always comes out of a negative situation. And even though this diet was just buying time, I learned important information about food intake that's impacted my food choices to this day. I'm still grateful to have tried the raw food diet and encourage anyone to try their last options before deciding to undergo their final option – be it a colectomy surgery, like me, or something else.
A Glimpse Into Our 2019 Indiana Summit...
Our 2019 Summit in Indianapolis, Indiana was awesome! Definitely our best yet. Check out video footage and a few photos from the day below!
Video of Our First Summit in California!
What a truly incredible day. Thank you to all of our speakers, attendees, volunteers, and sponsors who came together to make this day possible! Below you can view a short video as well as few photos from our 2019 Summit in San Francisco, California.
Q&A with our Operations Director!
Our operations director, Sydney Reed, was recently interviewed by the Chronic Disease Coalition! Check out her interview to learn more about her work with the Health Advocacy Summit!
Thank You to the Cystic Fibrosis Foundation!
We would like to give the BIGGEST thank you to the Cystic Fibrosis Foundation for making us an awardee of their 2019 Impact Grant! 🎉We are so honored to receive this grant and plan to use it to create virtual components to our events which will allow patients who are unable to attend our events in person the option to attend and participate remotely wherever they are. Once again, thank you to the Cystic Fibrosis Foundation! With your support we will be able to bring even more young adult patients together and ensure that no one is left behind 💜
Registration Now Open to Young Adults for One-Day, Multi-State Health Advocacy Summits to Empower Patients with Chronic Illness
SAN FRANCISCO - July 22, 2019. Registration is now open to patients ages 13 to 30 who live with a chronic or rare disease and would like to attend one of the free events in California, Indiana, or Texas. The events are hosted by Health Advocacy Summit (HAS), a non-profit organization which facilitates community events to help educate, empower, and connect patients.
The 2019 lineup includes:
San Francisco (September 21st, 2019), REGISTER HERE.
Indianapolis Indiana ( September 28th, 2019), REGISTER HERE.
Edinburg, Texas (October 19th, 2019), REGISTER HERE.
These events are free to those who wish to attend, but space is limited.
“This is an opportunity to connect with fellow patients, gain valuable information and resources from health professionals and take part in empowering discussions with influential activists from the chronic illness community,” says Sneha Dave, HAS Executive Director and senior at Indiana University.
Dave, who has lived with severe ulcerative colitis since the age of six, decided to create an advocacy event in 2017 during her freshman year for students like her, coping with a chronic condition while juggling school, work, and independence. The event was so successful, she decided to start her own organization to help fund events like these across the country.
The organization’s first summit brought together 14 students and six speakers from across the US. For many attendees, this was their first time interacting with fellow patients their own age.
More events are planned for 2020, including one in North Carolina.
For event details and registration please visit www.healthadvocacysummit.org. When registering, attendees can make accommodation requests, view the event schedule, and read additional information on the venue location and speakers.
The Health Advocacy Summit team is dedicated to improving the lives of young adult patients through their events, online support networks, and programs. To learn more about HAS please visit www.healthadvocacysummit.org.
ABOUT HEALTH ADVOCACY SUMMIT
The Health Advocacy Summits are daylong, no-cost events for young adults (between 13 and 30) with chronic and rare diseases. We want to enable our attendees with the support, knowledge, and skills to become strong advocates for themselves and their communities. Their mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. The Health Advocacy Summit is a recognized 501(c)(3) nonprofit organization. To donate, visit Securely Giving.
Learn more at www.healthadvocacysummit.org
Press Contact:
Sydney Reed
Operations Director, Health Advocacy Summit, Inc.
sydney@healthadvocacysummit.org
Why I Became an Advocate for People With Chronic Disease
By Sneha Dave
Dreamers are given the gift to believe, and for me believing became life-changing.
I came home from the hospital after losing my entire large intestine in a hard fight with ulcerative colitis. The next day, I gave up, because I felt that I had lost. One week later, though, I received a transformational gift. I am not sure where that gift came from, but it was a fighting spirit.
I have always had an incredibly supportive family, but I had no one who could truly relate to what I was going through, and I felt alone in battling ulcerative colitis. Not wanting others with chronic health conditions to feel alone in their fight, I decided to get into advocacy. I also became an advocate because my best friend died of osteosarcoma – a cancer that starts in the bones – and the chronic inflammatory bowel condition Crohn’s disease, and because I lost my childhood to ulcerative colitis. I started a nonprofit organization, the Crohn’s and Colitis Teen Times, became an inspirational speaker and began volunteering to support individuals with chronic conditions.
Becoming an advocate can be as easy as opening up about your illness and sharing your story to educate others with the same condition. Here are some reasons why you should be an advocate:
Being an advocate is simple. The best way to advocate is to not be shy about your medical struggles. I used to have numerous accidents and frequently have to use the restroom, both of which are extremely difficult to talk about, especially with teenagers. In middle school, my peers did not know I had ulcerative colitis, or that in eighth grade I had a peripherally inserted central catheter, or PICC, line under my jacket. In ninth grade, I began telling people about my illness and it became easier for me to attend school, because people understood. While the sympathy I received got repetitive, increasing awareness about a disease was, in itself, very gratifying.
You will gain a great support system. When I recovered from a flare-up of ulcerative colitis, I became involved with my local chapter of the Crohn’s and Colitis Foundation of America. I met a number of people whose medical journeys were similar to mine. I was able to relate to so many people, and I was able to find out about an amazing camp for kids and teenagers with inflammatory bowel diseases called Camp Oasis. When I publicly share my story, even audience members who do not have IBD become a part of my fight. Educating people has been amazing, because I feel understood, and I hope that's created greater empathy for people with these diseases.
You will heal emotional wounds you thought you didn’t have. I have always taken my disease in stride and generally tried to remain positive. However, coming out of my first major surgery, I felt lost returning to school full-time and adjusting to mainstream society. I was emotionally wounded. Meeting people with similar stories was inspiring because I saw their accomplishments and success in spite of the road blocks created by this illness. I realized that there was a life beyond recovery and treatment.
It’s public service. Advocacy serves your own community well through education as you share information on the barriers and opportunities created by your illness. You will feed off the inspiration you give to others. I truly enjoy speaking on behalf of Riley Hospital for Children at IU Health in Indianapolis at Children’s Miracle Network Hospitals' dance marathons to raise money for the hospital that saved my life. Whether you believe in volunteerism or not, it's truly amazing the impact your experiences can have on others.
It will change your attitude. I have always equated optimism to perspective. As I met more people while attending numerous events, I became aware of how much worse other people have had it. My best friend, who I met at an education conference, and who passed away, constantly inspired me to have an optimistic view on my own disease. Meeting these people and forming friendships became a reason for me to fight harder with my ulcerative colitis. Instead of giving up because of my disease, advocacy became a way for me to be inspired to live life fully.
You’re on your way to helping find a cure for your disease and others. When people hear your story they feel inspired to contribute to finding cures. When you share your journey with your disease, it inspires others to raise funds for good causes. I speak at many Children’s Miracle Network dance marathons to raise money for my children’s hospital, Riley Hospital.
So How Can You Become an Advocate?
Start by contacting your local organization that advocates for your illness, and share your interest in volunteering. If you do not have one, create your own group! Engage the one or two people you may know with your same condition or health challenge.
Social media is a great way to follow people going through similar struggles, and to collect and give tips without leaving your home. It can be extremely difficult to find people in your area, as I struggled with that because many people are not completely open about their illness. Furthermore, if you find someone who is insensitive or uneducated about your medical circumstances, speak up. This may, in some instances, even include sharing your perspective with medical professionals.
Come up with a unique idea that will garner attention and in return help people. I created the Crohn’s and Colitis Teen Times, which is a nonprofit organization that provides support to not only individuals battling inflammatory bowel diseases, but all chronic illness sufferers. This is one way you can create that fundamental support system needed for almost every chronic illness. There are so many platforms for advocacy through social media, YouTube or simply educating others about your illness.
It’s my desire to see more people talk about their illness to raise awareness and create more empathy for other individuals with similar conditions. While I longed to be a “normal” teenager, I realize that my struggles led me to this great gift of advocacy.
You are never too old or young to raise your voice for not only yourself, but for many others who are in genuine need of support. Don’t forget that advocacy is a big word with small origins.
Press Release: Local Health Programs Get National Recognition
Indianapolis, IN – On May 24, 2019, the Health Advocacy was featured in Rural Health Models & Innovations, a national collection of successful rural health programs and interventions maintained by the Rural Health Information Hub (RHIhub).
The Health Advocacy Summit provides advocacy resources for young adults with chronic and rare diseases in Indiana, Texas, California, and North Carolina. The program’s mission is to create events across the nation that empower young adults with chronic and rare diseases to become advocates and change-makers in society
Since 2017 the Health Advocacy Summit has facilitated events in three states, including Texas, Indiana, and North Carolina with California being added in 2019. Health Advocacy Summit has partnered with organizations and advocates in the chronic and rare disease space to provide advocacy resources and connections for young adults.
“We are really trying to create outreach to an often forgotten demographic, young adults with chronic and rare diseases. We are especially interested in connecting and providing support to this population in rural communities, where resources and a network of support may not be as accessible,” said Sneha Dave, executive director of Health Advocacy Summit.
The Health Advocacy Summit was selected by RHIhub because of its innovate services and impact on rural communities. To read the full project summary, visit https://www.ruralhealthinfo.org/project-examples.
RHIhub is a national online information center on rural health issues, funded by the Federal Office of Rural Health Policy. Their website includes over 12,000 resources specific to rural health. Rural Health Models & Innovations features hundreds of successful programs that are serving rural residents across the nation.