Marfan Syndrome is a life-threatening genetic disorder that affects connective tissue. According to the Marfan Foundation, the most common (easy to see) signs of Marfan Syndrome are:
Long arms, legs and fingers
Tall and thin body type
Curved spine
Chest sinks in or sticks out
Flexible joints
Flat feet
Crowded teeth
Stretch marks on the skin that are not related to weight gain or loss
There are other signs that are harder to detect, which include heart problems (especially aorta), sudden lung collapse and eye problems.
Each person is affected differently.
My 16 year old son was diagnosed with Marfan Syndrome today. Last year at his well-check, he had some signs. This year, he has a few more.
He’ll be getting an echocardiogram and electrocardiogram, as well as visiting the genetics clinic at Texas Children’s Hospital.
**clarification: the pediatrician informed me today that this is an INITIAL diagnosis in order to start the ball rolling on tests…
