Our International, Virtual Health Advocacy Summit is Almost Here!

Our Virtual Summit is happening on August 8th! While the pandemic has forced the Health Advocacy Summit to cancel all of our in-person summits for 2020, it has also allowed us to host this first-of-its-kind international, virtual event! Our virtual summit is unlike anything we've seen before and is especially important in maintaining peer connection, support, and finding resources during this pandemic. 

Those diagnosed with a chronic medical disability, as children or young adults, face a lifetime of illness. It is estimated that there are approximately 20 million young adults living with serious, lifelong diseases. The ongoing global pandemic has only served to increase the disease burden for this population, many of whom are fighting to survive and keep their heads above water. Now more than ever, young adult patients are in desperate need of support, information, and resources. That's why we're here!

Our Virtual Summit is a free, daylong event to connect and empower young adults (between 13 and 30) living with chronic and rare diseases. This year, we have the opportunity to bring patients together on an international scale and will feature some of the most powerful patient advocates across the country and beyond to speak on critical issues affecting this patient demographic.

Engage with us on social media during the Summit! What sessions are your favorite? Anything a speaker said that resonated with you? We want to hear from you! Use the hashtag #HAS2020 and tag us @healthadvocacysummit on Instagram and @HA_Summit on Twitter!

Happy Chronic Disease Day!!

Chronic Disease Day is tomorrow, July 10th! Chronic Disease Day is a day that brings together state and local governments, advocacy groups, and communities across the country to recognize and support the millions of Americans living with debilitating chronic diseases.

This day is especially important to us as we are an organization that represents and is composed of young adults living with chronic and rare diseases— an often overlooked subgroup within the chronic disease patient population.

The burden of chronic disease in adolescence is increasing as more chronically ill children survive beyond the age of 10. Now, conditions once seen only in young children are being seen beyond childhood and adolescence. Individuals diagnosed during or prior to young adulthood face a lifetime of illness, the impact of which has not received adequate attention. It is estimated that there are approximately 20 million young adults living with serious, lifelong conditions.

Limited Support for Patients Facing a Lifetime of Illness

• The financial burden of a lifelong illness is massive, yet there are very few reliable systems in place to support these patients, many of whom are left to their own devices as they fight to survive and keep their heads above water.

• Often, these patients struggle to find insurance <br>coverage that adequately meets the needs of serious, continuous illness. A report published by Harvard T.H. Chan School of Public Health states that approximately nine in ten seriously ill patients (91%) have health insurance coverage, but that “37% of these patients report having used up all or most of their savings dealing with their health and medical condition… and 23% report being unable to pay for basic necessities like food, heat, or housing.”

• A large portion of chronically ill persons live under the poverty line, trying to make do with what little they get from social security, a system which unfortunately keeps these individuals from establishing much of a savings or any other financial safeguards for their future. Furthermore, because of the unpredictable nature of their illness, many of those living with a chronic disease are unable to pursue career or higher education opportunities that would provide them with the financial independence and security they desperately need.

Chronic Disease Amidst a Global Pandemic

These are challenging times for all of us. For those living with a chronic disease, many of whom are immune-compromised, this time can be especially frightening and can make managing their health even more difficult. Yet, while these individuals are considered vulnerable and at a higher risk for serious illness from Covid-19, they are also a source of strength and wisdom for the rest of us as we try to adapt and cope with the changes caused by this global pandemic. Many of these individuals have been inadvertently prepared for this pandemic due to the nature of their chronic disease. Being isolated and figuring out how to function and stay in touch with the rest of the world from home, keeping an emergency stock of food and supplies, and adjusting to ever-changing conditions are norms for many individuals living with a chronic illness.

This year, our goal is to recognize the strength of the millions of disadvantaged chronically ill and disabled patients who are trying to navigate life—and this unprecedented pandemic—with a chronic medical disability. We also want to bring awareness and understanding to the population at-large and inspire everyone to be cautious and mindful of their decisions during this difficult time.

A HHT Survivor Story

By Sabrina Vera

My name is Sabrina Marie Vera, I’m a proud first-generation graduate of Pomona College, Puerto Rican woman, and survivor of Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic and deadly blood disease. My family and I suffer from HHT, which took the life of my older brother Robert 15 years ago. HHT causes malformed blood vessels throughout the body that cause sudden and extreme bleeding, both internally and externally, and can lead to brain hemorrhage, strokes, and heart failure. One of the first signs of HHT is nosebleeds. Even though some patients report never suffering from nosebleeds, I bleed from my nose at least twice a day and have been hospitalized in the past due to extreme blood loss. One in every 5,000 people has HHT, which is about 1.4 million people worldwide or 0.025% of the world’s population. My grandmother, mother, all of her siblings, my brother, cousins and I are all members of that 0.025% suffering from HHT, which never skips a generation. My family also suffers from HHT type one, the worst genetic mutation form of HHT. 

At least 40% of people with HHT have pulmonary arteriovenous malformations (AVMs), which must be coiled to keep them from growing and erupting. Earlier this year, I was on a plane home from Puerto Rico, and while the plane was landing and the pressure was changing, I felt a very sharp pain in my lungs. Days passed and I felt like I couldn’t breathe, my heart was racing, and my chest plate was swollen and sore. I went to the doctor thinking it was anxiety or, even worse, possible breast cancer, but he immediately sent me to get my lungs scanned. Deep down, I had a feeling it was my AVMs, but I was a bit in denial out of fear of surgery. That same night my doctor called me and told me I needed lung surgery immediately. I was about three days away from flying back to Pomona to start my final semester of college, so I hesitated. “Sabrina, if we wait on doing this surgery, you won’t be walking across the stage this Spring.” I was told I had an AVM with a feeding artery and three AVMs that were approaching 10 mm. For reference, AVMs are flagged for surgery at about 3 mm. At that moment, I couldn’t help but cry. I wanted to put my education before my health and my life, which is something I think a lot of students with disabilities, especially first-gen, low-income students of color, tend to do. Two days later I headed into surgery. The procedure calls for patients to be partially awake to breathe in when they coil the AVMs. I felt them moving around inside the depths of my chest, it’s a feeling I will never forget. Once I came through, I immediately cried, vomited, and bled from my nose while my sister held me. It was really overwhelming; I felt absolutely terrible. But, the surgery was successful, and for that, I am eternally grateful. 

My brother Robert passed away from a ruptured cerebral AVM. I remember how his brain scan lit up like a Christmas tree, each dot representing an AVM scattered throughout sensitive parts of his developing brain, from his memory to his motor skills. A surgery for him was extremely risky at the time due to a lack of research and resources. My cousin Pricilla who also has AVMs in her brain underwent the surgery and came out of it confined to a wheelchair and partially blind. So, of course, my brother, a teenage boy who wanted to live life to the fullest, was hesitant. Unfortunately, Robert spent the last months of his life in immense pain, from brutal headaches to gut-wrenching seizures every day, until June 9th, 2005, when he passed away. 

Three years after Robert died, doctors found AVMs in my brain and liver. I remember the silence in the room when the doctor told my mother about my brain, followed by her crying at the possibility of reliving the same nightmare with me. However, I have been extremely blessed. My cerebral AVMs, unlike my brother’s, are growing at a rate that I can monitor. When I scanned my lungs this year, I also scanned my brain. Two of my AVMs are still small, and one is about 6 mm. As most people with rare diseases can attest, my doctor was unsure what to do because “it’s just not that common,” which is true. Cerebral AVMs affect less than 1% of the world’s population. Doctors are unsure if it’s worth coiling my larger cerebral AVM because of its location. “I worry about that AVM because it’s growing in your frontal lobe, right around the area that is most responsible for controlling your personality.” I couldn’t help but let out a cynical giggle. The very core of my personality - being a survivor and advocate for HHT - is now being threatened by HHT. Life is full of many moments of comical irony, the type of irony that makes every deep breath a bit sweeter. 

I have been feeling so much better since my surgery, and I am keeping close tabs on my brain. Sure, I bleed from my nose every day and have had moments when I’m eating and bam! - blood in my soup! Or on my favorite shirt. Or even sometimes on my homework. Every red drop of blood and bloodstain is simply another potent reminder of HHT, the hidden killer that makes appearances that are oftentimes subtle. Maybe in the form of Telangiectasia (small red spots) on your tongue. But sometimes, HHT is not subtle at all. HHT is more than nosebleeds; it’s a brain scan that leaves your mother in somber shock, it’s the news from the ER that your seventeen-year-old son didn’t make it, it’s the sobering reality that you may not be able to have kids. Sometimes, it’s nothing at all: 90% of people with HHT are undiagnosed. I’ve learned that’s sort of the calling card of rare diseases: we don’t know what to expect, there’s simply not enough information and oftentimes patients are left in the dark. It usually takes something tragic to catalyze concrete change for patients. After my brother’s death, there were HHT conferences held in his name, an abundance of research was conducted, they improved the surgical procedures for coiling all organs, and June was named the national HHT Awareness month. We’ve come a long way as a community of blood sisters and brothers united by common occurrences like going through a box of tissues in five days. But, as they say in the community of people with a rare disease: alone we are rare, but together, we are strong.

Rachael Holmes is leading our peer-support meeting for young adult patients!

June 11: Rachael Holmes

Actor & Advocate

Leading our virtual meeting this Thursday at 7 p.m. ET is actress and advocate, Rachael Holmes! ♥️🎬 Rachael holds an MFA from New York University. She joined the Actors Equity Association (AEA) in 1998 and the Screen Actors Guild - American Federation of Television and Radio Artists (SAG-AFTRA) in 2004. On top of being an actor, she is a Professional Development Specialist and Diversity, Inclusion, Equity, and Anti-Racist Champion and has worked heavily in Silicon Valley.

Chronically ill and injured for most of her life, some of her artistic credits include Maureen in Marvel's Wolverine: The Lost Trail, Night Call, Amazon's Mad Dogs, ABC's Chasing Life, Instinct, Mysteries of Laura, The Good Wife, Dirt, national commercials, and voice-overs. You can learn more about Rachael and her work at rachaelholmes.com.

Keep High-Risk Students Safe!

Many students with chronic illnesses are concerned about the upcoming fall 2020 semester due to the ongoing pandemic. Between now and July, numerous colleges and universities are publishing their opening plans for the fall 2020 academic year.

We developed a campaign with resources for students with chronic medical disabilities to help them navigate school in the age of Covid-19! Students should not feel forced to choose between their education and personal safety. We strongly encourage schools to listen to the voices of students with chronic and rare illnesses and consider these individuals as they make plans for the upcoming school year. Email us at college@healthadvocacysummit.org with any questions!

Our Commitment to Anti-racism

We are collectively releasing a statement on behalf of the Health Advocacy Summit and the Crohn’s and Colitis Young Adults Network. This is about George Floyd, Breonna Taylor, Ahmaud Arbery, and countless others. This is also about checking ourselves in our workplace, home environment, and our own assumptions.

Health Advocacy Summit and its program Crohn’s and Colitis Young Adults Network are in strong opposition to the persistent racism and inequity that has and is plaguing our society at every level. We are disheartened by the continuing challenges that Black Americans face within society. We are here and we will speak up at every opportunity to remove systematic barriers that have gone ignored for too long. We as an organization recognize our deficits and will be putting our best effort with our resources to ensure we are reaching the most marginalized within our community. Racism at its core is a public health crisis. We cannot hope for equity in public health or the chronic illness community before racial injustice is proactively addressed.

We are led by the next generation. In that vein, we will not sit on the sidelines on issues that affect those in our community, especially within the medical system. We are envisioning the future we see through our gradual progress within healthcare. We hope that you will do the same to fight for each other, with each other. Black children have a 500 percent higher death rate from asthma compared to white children (epa.gov). Inequities don’t stop here - there are known disparities to access treatment and diagnosis for diabetes, HIV, mental health, just to name a few. Racial bias is apparent within the healthcare system with massive issues with apathy and poor communication from health professionals. We can empower those facing systematic societal barriers by committing ourselves to ensure that we are addressing the most marginalized. In the coming weeks, we will release a health equity statement revealing what we should be doing as community members to better support the most marginalized within healthcare. What we want you to know is that we care and we will do everything we can to support, empower, and rise up when our community needs it the most. 

Let’s get uncomfortable and real with ourselves. There is no more important time and we need every one of you to speak out and fight for each other. 

In solidarity, 

Health Advocacy Summit and Crohn’s and Colitis Young Adults Network

Happy World IBD Day from the CCYAN Fellows!

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.

  • Yoga District

  • @outstanding.blossom.yoga

• 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.

  • Calm

  • Headspace

  • Insight Timer

• National Alliance on Mental Illness (NAMI) has a number of resources. We’ve listed a few below.

  • NAMI HelpLine

  • Phone

  • Email

    • 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.

  • NAMI COVID-19 Information and Resources

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

• Co-Living COVID-19 Contingency Plan

• 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.

• COVID-19 Resources for Students

• Public Coronavirus Company Communications

• Quarantine Activities for Kids

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