The Chronic Disease Coalition sat down with ambassador Sydney Reed to learn more about California’s first Health Advocacy Summit that will be hosted in San Francisco on September 21. Since being diagnosed with her first chronic health condition as a teenager, Reed, now in her 20s, has worked to understand the needs of young adult patients and develop solutions and resources that help to address some of the challenges that accompany patients during this time in life. Her passion is unparalleled and is exemplified throughout her advocacy work; learn more about Reed’s story and the Health Advocacy Summit below.
When did you first receive a chronic disease diagnosis?
I was diagnosed with juvenile dermatomyositis at the age of 18. My symptoms progressed seemingly overnight and I quickly learned how complicated it can be as an adult and teenager living with chronic disease.
I planned to move to San Diego and attend college, but instead I rewrote my plans and had to figure out who I was now. Living with a chronic disease impacts your identity and sense of self – I couldn’t do many of the things I previously could. When you’re 18, the world is supposed to be yours, but suddenly you have these limitations. It can be an isolating experience.
How did you become involved in advocacy?
I graduated college in 2016 and took a year to focus on my health and explore different advocacy avenues. I stumbled across an article by Sneha Dave, who had shared her story and experience living with ulcerative colitis. I reached out and she wrote back immediately.
After connecting with Sneha, I learned that she had created a nonprofit organization called the Health Advocacy Summit. This organization works to create advocacy summits for young adults living with chronic and rare diseases. I was impressed with the work that she had been doing and began to help her grow the organization. Over the last year we have been working to transform our organization into a more holistic and expansive source of support for chronically ill young adults, not only by expanding our annual summits to more states across the U.S., but also by developing online programming that can provide patients with remote access to resources and peer support. We are also working with the Cystic Fibrosis Foundation to add a virtual component to our events so that patients can have the option to attend our summits remotely if they are unable to attend in-person.
Why did you decide to host the Health Advocacy Summit in California?
While in college I had looked for a support group to join, but there wasn’t anything out there for young adults like myself. As a result, I tried to start my own small group, but I ran into several challenges that made it difficult to get it off the ground. There are very few organizations presently that focus on chronically ill teens and college students and the impact chronic illness can have during this period of life. I believe the Health Advocacy Summit is an important first step in connecting with young adults and building a community centered on their shared experiences. Being able to connect with others your age who are going through a similar struggle seems like a small thing, but it can have an incredibly positive impact on a patient’s life, at least that has been my experience.
What can participants expect to see at the event?
This is a free, day-long event with four breakout sessions. The event is grounded in an interactive, discussion-based structure. We hope to inspire others to share their experience and create deeper connections with the other participants.
We’re thrilled to welcome a dynamic group of speakers, including two pediatric social workers from UCSF Benioff Children’s Hospital, who will cover topics ranging from the mental and emotional aspects of chronic illness to understanding the financial resources available to young adults with chronic conditions. Our keynote speaker is active ankylosing spondylitis advocate Charis Hill. She will be participating in a panel discussion focused on using storytelling as a form of advocacy along with fellow advocates Alice Wong and Christine Von Raesfeld.
It’s my goal that people leave this event knowing they aren’t alone. Being a young adult with a chronic disease doesn’t have to be isolating, and I hope that participants create meaningful friendships that last beyond the event.
What are your advocacy goals for the future?
Looking back at where I was two years ago, it’s exciting to see how far I’ve come and the connections I’ve made with some truly incredible people in the chronic illness community. I hope that in the coming years we’re able to continue growing this organization, expanding online programming and hosting more events in states across the nation. There is a huge need for support of young adult patients and my goal is to fill this gap and improve their quality of life.