BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, delving deeper into what it’s like to live with a rare disease, including conversations on advocacy, mental health , survivor’s guilt, treatment of minority patients, and more.
Monday’s event, “A Window Into RARE,” was hosted by Liza Bernstein, a patient advocate and three-time breast cancer survivor. Panelists included columnists Paris Dancy from Cushing’s disease newsMichelle Gonzaba from Myasthenia Gravis News, Claire Richmond from Porphyria Newsand Sherry Toh of SMA news today.
“It goes beyond the superficial level of understanding what a rare disease is,” Gonzaba said of the roundtable shortly after it ended. “We talked about…living long term with the disease, day to day. What experiences can I actually have? »
The discussion revolved around five questions that probed the realities of living with rare diseases. The audience for the 90-minute roundtable peaked at nearly 200 people.
Anonymous and named viewers, some of whom did not have rare diseases themselves, left their comments and questions in the Zoom chat. A couple were answered by columnists before the event ended.
“I can’t say how important this event was,” Emily, 28, recently diagnosed with seronegative rheumatoid arthritis and chronic migraines, said in a private message to an event organizer. She declined to fully identify herself because she had not yet disclosed this diagnosis to her new workplace. “My sister and I cried many times how much this resonated with both of our own experiences with chronic illness.”
The first question posed to panelists encompassed the main theme of the roundtable – things that are overlooked in rare disease advocacy and awareness. Richmond dove into the mental health aspects of living with a rare condition like acute hepatic porphyria, and the traumatic nature of a diagnostic odyssey and recurring hospital visits.
Looking ahead to her mother-in-law’s journey with colon cancer, Dancy described the need to gain as much knowledge about a given disease as possible.
Toh, in response to a question about concrete examples where progress is being made to improve the lives of people with rare diseases, noted that the video game industry strives to think of people with disabilities when designing games. or equipment.
“Looking at the net benefit that people with disabilities can bring is not something I’ve seen much in disability advocacy – except in the gaming world, where the accessibility scene now focuses more on implementation of accessibility than on why accessibility is needed,” Toh wrote, which was repeated by his friend and colleague SMA news today columnist and panelist Brianna Albers. Toh lives in Singapore and was unable to attend the event due to time difference with the United States
Features that slow down the pace, highlight dialogue for the deaf, and remove repetitive motion are becoming more common.
The final questions asked columnists what they would say to people newly diagnosed with a disorder and those currently living with their diagnosis.
Dancy repeated his advice to seek out information, but added practical nuggets, such as “Allow your lawsuit to become your triumph” and “Don’t make permanent decisions based on a temporary situation.”
Toh also reminded viewers that having a rare disease isn’t their fault and they shouldn’t blame themselves.
Richmond’s advice to people currently living with a rare disease was not to compare yourself to others. All panelists agreed.
“Be kind to yourself,” Gonzaba said during the roundtable. “And I would also say don’t let it become your full identity. You are not just someone with a rare disease.
Questions from the audience closed the round table. Most questions were disease-specific, although one survey explored how to navigate long-term health plans in the face of short-term health crises. A more personal comment from someone diagnosed with amyotrophic lateral sclerosis (ALS) nine years ago asked how to emotionally manage his life when many of his friends had passed away. Panelists suggested talking it over with a friend and using whatever time they have left to support the community.
Panelists were invited to talk about what matters to them, and this idea is what inspired Richmond to participate in this event. This broadened the panel discussion and allowed for diverse perspectives, Richmond said. He didn’t just focus on frequently discussed topics like the diagnostic odyssey, though she considered those topics equally important.
“It was about things that we don’t usually talk about as rare living adults,” Richmond said.
Bernstein added that these often overlooked topics, which were discussed throughout the panel, are relevant and helpful to members of the rare disease community.
“It’s so empowering to know that we’re not alone, especially when very few people in the world have your diagnosis or experience,” Bernstein said. “So hopefully this event will help people know that they are not alone.”
