It's Ankylosing Spondylitis Awareness Month!
“Living with Ankylosing Spondylitis/Axial Spondyloarthritis is a special kind of life. It's a common disease but so many have never heard of it. I'm confronted with defining and explaining my condition every time I introduce it, which takes considerable energy. Spondyloarthritis Awareness Month every May is an opportunity to educate people about a systemic disease that impacts 2.7 million Americans (including many young people); often causes debilitating chronic low back pain; and is vastly misunderstood by many healthcare providers, leading to misdiagnoses and long delays in final correct diagnosis and treatment.”
This is a quote from our friend, former Summit speaker, and award-winning advocate, Charis Hill. Charis is a professionally disabled writer, activist, speaker, and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety, and Post-Traumatic Stress Disorder. They live with three cats and lots of plants in a falling-apart house bought while living in extreme poverty. Thank you, Charis, for being the unstoppable advocate that you are! 💙
Two-week Virtual Storytelling Workshop for Young Adult Living With a Chronic or Rare Disease!
MAY 14 & 21: Ali Hardy
Actor & Playwright
Storytelling workshop this Thursday led by Ali Hardy! Our next two virtual meetings will be dedicated to this workshop and learning how to craft your personal narrative. 👩🏻💻📝 These meetings are on Thursday of each week at 7pm EST. Send us a message if you’d like to join and keep reading to learn more about Ali’s own experience below!
Ali is an actor, playwright, and chronic illness advocate. During her junior year of high school she contracted the mono virus. Within a few months she began having Hemiplegic Migraines on a daily basis and had to finish high school from home. After nearly six years bed ridden from multiple chronic illnesses, she moved to NYC to attend the New York Conservatory for Dramatic Arts.
During her second year she was diagnosed with Antiphospholipid Syndrome and spent much of the year in and out of the hospital. Two days after graduating, Ali had to begin treatment full time to manage her diseases. To cope with her declining health, she began writing plays based on her experience as a patient.
The following summer she directed and produced her first original one act play. Since then she has created multiple plays about life with chronic illness, including Grace and Dennis, the first play to feature a character with Hemiplegic Migraine.
This Week's Virtual Peer-Support Meeting for Young Adult Patients will be led by Nitika Chopra!
April 30: Nitika Chopra
Founder of Chronicon
Nitika Chopra will be leading a discussion on advocacy work across different mediums at our virtual meeting this Thursday!
Nitika is the founder of Chronicon, a media and events company, dedicated to elevating the lives of those living with a chronic illness. Nitika was diagnosed with psoriasis at the age of 10 and psoriatic arthritis at the age of 19 and lived over 17 years of her life being defined by her conditions.
In 2010 she decided to take all of the lessons her health journey had taught her and use it to help others with the creation of her online magazine Bella Life. Since the start of her entrepreneurial journey Nitika has hosted her own TV talk show on Z Living called Naturally Beautiful, hosted over 40 events with hundreds of guests in attendance and has created dynamic partnerships with over 150 brands in the wellness space.
After 10 years in event creation, Nitika launched Chronicon in the fall of 2019, focused on those living with a chronic illness. The event sold out, had over 2,000 livestream viewers, high-level brand sponsors, and has plans to expand in 2020. Follow her for daily inspiration @nitikachopra + @chroniconofficial.
Hannah Olson of Chronically Capable is Leading This Week's Virtual Peer-Support Meeting!
April 16: Hannah Olson
Patient Advocate & Founder of Chronically Capable
This Thursday’s virtual meeting will be led by patient advocate and founder of Chronically Capable! The young founder from Massachusetts currently resides in Austin, Texas.
During her sophomore year at Boston University, she was diagnosed with chronic Lyme disease which nearly derailed her early career. Rather than accepting this fate, she created a company last year called Chronically Capable which exists to help people with chronic illnesses and disabilities to find flexible work opportunities. Her ultimate goal is to eliminate the unemployment gap between disabled and abled Americans. In addition to discussing her experience creating Chronically Capable, Hannah will be leading a discussion on ways to be proactive while job searching during this pandemic.
Spaces are still open for this meeting! If you’d like to join, send us a message at virtual@healthadvocacysummit.org!
Weekly Virtual Peer-Support Meetings Starting in April!
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.
