How was your daughter finally diagnosed with Marfans? My son is 13 and his cardiologist kept asking if we have tall people in our family, but never mentioned marfans by name. My son was found to have aortic root dilation, measuring 28-30mm. It was found during a routine echo. He is 5'8" tall and weighs 125 lbs. The md just said to schedule a follow up echo in one year. I hate to just sit and wait, when we could possibly be doing something to delay the growth (medication). The md also placed no restriction on physical activity, he plays baseball. Seeing him do his workouts with his team makes me nervous. Any info would be appreciated. Thanks!
Your Welcome. If you have any more questions about Marfans let me know. My daughter has Marfans.
many thanks for the info.
Usually people with Marfans Syndrome are tall and lanky.
hi
Marfan syndrome is a connective tissue disorder that affect mainly 3 systems
skeltal system
unusualy long stature, hyperkinetic joints, contractures, kyphoscoliosis, bossing of forehead, pectus carinatum or excavatum(anomalies in chest) hyperextensibility
eye
myopia, dislocation of lens, reduced vision
heart
mvp, aortic root dilatation
atleast 2 systems shud be affected to diagnose marfans
but have a thorough follow up by series of echos as ur doctor advice.