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    Connecting With Community

    hands joined together

    By Maya Brown-Zimmerman

    Author’s note: You might have seen the headlines: Isaiah Austin, a projected NBA draft pick from Baylor University, was just diagnosed with Marfan syndrome, the genetic disorder that about 200,000 other Americans (including myself) have. This diagnosis comes with significant life changes, and for Austin, 20, that unfortunately includes a new career. Professional basketball and other high-impact sports are not recommended for people with Marfan because of the risk of aortic rupture. I imagine this is a tremendous shock to him, especially at this stage in his life: an adult, about to embark on a career that’s been a long-held dream. The thoughts of the Marfan community are with him and his family at this time.

    It’s been almost 21 years since I was diagnosed with Marfan syndrome, a rare disorder of the connective tissue that affects most of the body, including the heart, eyes, lungs, and bones. There are many things I’ve learned about my diagnosis and about myself over the years, but the lesson I’m reminded of over and over is the importance of community.

    I was initially diagnosed at 8 years old. At that age, I couldn’t understand what having Marfan really meant – I just knew that I had to stop riding horses and playing basketball.

    As I got older, though, I became increasingly angry about my diagnosis. It was obvious I wasn’t like the other kids: at 13 years old, I was nearly 6 feet tall and weighed only 90 pounds. I was tired of being left out of activities, tired of being made fun of, tired of my parents hovering over me. I felt all alone. I handled this by rebelling against my doctors’ and parents’ orders.

    It was my mother who realized that meeting other people with Marfan would do me good. We connected with a local group, and I met a girl my age that I hit it off with right away. Through the local group, we eventually got involved in the national foundation, and a year later I attended my first national conference. I lack the words to adequately describe what it was like to  meet  other kids my age who were like me. It was life-changing. I felt like I was home.

    As a result of the friendships I developed through the foundation, my entire outlook on Marfan syndrome and myself changed. I began to be proactive in my health care and in educating others. I started volunteering with the national foundation. I became able to accept that, although having Marfan syndrome doesn’t define me, it is a part of who I am … a part that I now can love and appreciate.

    I sometimes meet parents who are afraid of getting their children involved with their diagnosis community. My father was one of them. He was afraid that meeting adults with Marfan and seeing what my future could hold would scare me or make me see myself as sick and helpless. That couldn’t have been further from the truth! In the adults I met, I saw people who were happy and successful, people who became my mentors. In my fellow teens I saw resilience and creativity. And so to any parents who have the same fears as my father, I say please allow your child to participate in the community if they want to. Nothing can compare to having peers who truly DO know what it’s like to walk in your shoes!

    In 2 weeks, I’ll find myself at the annual Marfan Foundation conference yet again. This will be my ninth conference, and these days I run the teen program with a friend I met at my first conference, 15 years ago. There will be close to 100 teens this year. I can’t wait to see them creating and sustaining those life-changing connections with each other.

    What about you? Have you been able to connect with others who share your diagnosis? Has it been helpful to you?

    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.


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