Living Successfully with Marfan Syndrome_Daniel S


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Daniel and his family are active volunteers for the National Marfan Foundation, going above and beyond to raise awareness of Marfan syndrome and to raise funds for the NMF. In July of 2011, Daniel received the Foundation's Rising Star Award for his extraordinary efforts. His positive attitude in the face of living with a rare genetic disorder is an inspiration to us all. This presentation is his story in his own words.

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Living Successfully with Marfan Syndrome_Daniel S

  1. 1. Daniel S. Age 13
  2. 2. Diagnosis Diagnosed with Marfan Syndrome at age 7. Only one in my family Never heard of the syndrome before Doctor checking my back for scoliosis suggested that I might have Marfan syndrome Diagnosed by Genetics Doctor  Aortic Valve enlarged
  3. 3. My Features of Marfan Syndrome Heart affected Muscle tone and Skeletal system affected Eyes are NOT affected
  4. 4. Clinical Trial 3 year clinical trial at Johns Hopkins Hospital  I was on one of two different types of drugs they are studying for the treatment of Marfan Syndrome Finished trial 1 year ago Still under care at Johns Hopkins Take 2 medicines  Losartan and atenolol  Slow the effects of Marfan Syndrome on my aortic valve
  5. 5. Orthopedic Kyphosis – roundness of the spine See an orthopedic doctor once a year Kyphosis curve increased this year Wear back brace at night  Straighten back  Prevent need to have surgery
  6. 6. How I Felt About My Diagnosis When I was first diagnosed…  Angry  Playing basketball  Doing all things Marfan patients not allowed to do  Didn’t want to talk about it  Upset when people commented on my height and asked me why I wasn’t playing basketball  No military and career choices limited
  7. 7. Helping NMF Wanted to raise money for research Held different fundraisers  Dog walk  Heart and Soul Music concert So far I have raised over $8,000 for NMF Received the Rising Star Award at annual NMF conference in Oregon last year
  8. 8. My Future BUT, not just about raising money, it is about raising awareness and possibly saving a life. Changed my hobbies and focuses – tried new things Think of positive things I can do
  9. 9. Living My Life Still active  Agility train and trial with my golden retriever  Swim  Take walks  Ride a bike  Play piano With good medical care and a positive outlook, I can live successfully with Marfan Syndrome.