By Maya Brown-Zimmerman
Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with The Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom.
Marfan syndrome is a connective tissue disorder that affects about 1 in every 5,000 people, though only roughly half of affected people are aware they have it.
February 28 is Rare Disease Day, a time for all of us living with a rare condition to band together for awareness and improved funding for research initiatives. On a personal level, it prompts me to reflect on what it means to have a rare disorder.
Some days, having a rare disease means loneliness. It’s hard being the only person like you that you know of (especially true for me when I was a teen). Your friends and family might be well-meaning, but they don’t understand your fears or frustrations, what it’s like to live in a body that doesn’t always function like it should. And if your family and friends aren’t supportive, it’s even more difficult.
Some days it’s frustrating. You’re constantly having to educate your doctors. Most of them read a paragraph on your condition sometime in medical school, if that. It gets exhausting to stay one step ahead of the latest treatments, to search out the specialists, and argue it out with your local docs.
But there are some upsides. Your values change. I try to live in the moment. I never let a day go by without my family and friends know what I think about them. I’m truly grateful for my health and work hard to preserve it, while I realize that a working body is something many people my age may take for granted.
I’ve also connected with a rich online community. Social media is a great way for anyone to connect, but it’s particularly vital to the rare disease community. We may not get the in-person support we desire, but we can often find it via Facebook, forums, and blogs. Those friendships are real, and the information exchanged life-enhancing and even life-saving. I help moderate a large Marfan syndrome and related disorders forum, close to 3,500 strong. I’ve been able to “meet” people all over the world that way, occasionally even connecting with locals I didn’t know existed. Those relationships help drive awareness and research efforts, and strengthen me so much. These relationship can bring about sadness, as we lose friends too soon, and I find that I’ve had to learn to deal with loss much earlier than my peers. When all is said and done though, I’m immensely grateful for the friendships I’ve developed through The Marfan Foundation and Facebook.
Do you have a rare disease? What does having a rare disease mean to you?