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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.Age 13
DiagnosisDiagnosed with Marfan
Syndrome at age 7.Only one in my familyNever heard of the
syndrome beforeDoctor checking my
back for scoliosis suggested that I might have Marfan syndrome
Diagnosed by Genetics DoctorAortic Valve enlarged
My Features of Marfan SyndromeHeart affectedMuscle tone and
Skeletal system affected
Eyes are NOT affected
Clinical Trial3 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 agoStill under care at Johns HopkinsTake 2 medicines
Losartan and atenololSlow the effects of Marfan Syndrome on my
aortic valve
OrthopedicKyphosis – roundness of the spine
See an orthopedic doctor once a year
Kyphosis curve increased this year
Wear back brace at nightStraighten backPrevent need to have surgery
How I Felt About My DiagnosisWhen I was first
diagnosed…AngryPlaying basketballDoing all things Marfan
patients not allowed to doDidn’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
Helping NMFWanted to raise money
for researchHeld different
fundraisersDog walkHeart and Soul Music
concertSo far I have raised over
$8,000 for NMFReceived the Rising Star
Award at annual NMF conference in Oregon last year
My FutureBUT, not just about raising money, it is about
raising awareness and possibly saving a life.Changed my hobbies and focuses – tried new
thingsThink of positive things I can do
Living My LifeStill active
Agility train and trial with my golden retriever
SwimTake walksRide a bikePlay piano
With good medical care and a positive outlook, I can live successfully with
Marfan Syndrome.