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.