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Rebecca Shieh with her mother, Alice Shieh, at the 2010 NMF Conference
Interview by Meghan Joyce, Teen Council Member
Rebecca Shieh is a great role model for teens living with Marfan Syndrome. She received an award at the 2010 NMF Conference, and her positive attitude has influenced many. Recently I had the chance to get to know Rebecca a little better.
Tell us about yourself: Where do you live? What are your hobbies? I’m from San Jose, California. In my free time, I enjoy singing, acting, dancing, and volunteering. Those are my outlets because I can’t participate in competitive/physical activities.
When were you diagnosed with Marfan, and how did you feel about it? I was diagnosed in 2008 after my mom had an aorta dissection. At first, I was really angry about having Marfan Syndrome, and I couldn’t understand why it had to happen to me. I was angry for having physical restrictions, being made fun of in school, and not being able to see. Over time, I’ve come to realize that having Marfan Syndrome makes me so unique, and I appreciate the lessons about life it has taught me. I am really happy and satisfied with having Marfan’s now.
Had you ever met other teens with Marfan Syndrome before the Houston Conference? I met another girl before, but this was the first time I met a whole group of teens with Marfan. I had a lot of fun at conference, meeting teens from all across the country with Marfan. It was so cool to see that I wasn’t alone and that there were so many other teens out there who went through the same experiences and can really understand. They’re also so much fun to be around!
What kinds of awareness projects have you done? Last year, I brought the Hang-A-Heart campaign to my high school’s Red Cross Club because I was their project coordinator. I had the members of the club sell the hearts for $1 to raise money for the NMF. It was a great experience because I got to see so many of my friends raise money and spread awareness for something I really care about. In total, we raised over $160, and I am so glad that now many people in my school have heard about Marfan Syndrome and have donated to the cause.
What does Marfan mean to you now? Having Marfan Syndrome means I am special and unique. It means I can inspire people because of my story. Some people ask me if I could change one thing about my life, would I choose to not live with Marfan Syndrome. I always say no because it is a part of who I am--I love being able to show people that it is possible to find joy even when things aren’t the best. I love that I am a stronger person now because of what I have gone through, and I love that I have been able to meet some very inspiring and loving people as well. It’s so wonderful to be a Marf – to be part of this loving family that transcends state borders! It’s great to know that there are so many people with similar experiences that will support always you.
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