My Brief Story

I had scoliosis when I was 8 years old, when I had the surgery my curve was 139 degrees’, and I was 15. You are wondering why I take all that time. It’s because where I come from (Haiti) It’s hard to get visa to come to United State. When I finally get the visa I was 15. Before my surgery the doctor said that I have Marfan syndrome, but he told me that I don’t have to worry about it. After my surgery I went back home (Haiti),I was 16.I did not care or worrying about it bit ,I was only careful because I do not wanted to injure my back. When I was 18 I came back to the U.S after Haiti massive Earthquake. One night when I was watching a show “Untold stories of the ER” there was one women who had Marfan but her case was really scary. Since that day I start looking for answer. I did not find any good ones. Now I am 19 and I weight 120lb I do not have any pain or anything but my legs and my arms are longs. I don’t know what to expect and what to do.
bellelune bellelune
18-21, F
4 Responses Dec 16, 2010

I was also diagnosed with Marfans, I am 5'10" and I now weight 135lbs. This is the most I have ever weighted. My scoliosis is very mild, one can barely notice it but I always have my back checked among other things. It's very important that we have our heart checked.

Have a need to echocardiogram ( this test looks at the heart, its valve, and the aorta and slit lamp eye exam examination ant other test (see Ghent nosolgia revised 2010) revise the web of National Marfan Foundation, en this web see diagnosis

Severe scoliosis is common in Marfan as well as in Beal's syndrome.

The genetic marker for Beals Syndrome is an extra crinkle or curve in the ear. Marfan Syndrome does not have this genetic trait. My husband was first diagnosed with Marfans, but was rediagnosed at age 25 with Beals.

I have a cousin with severe Beal syndrome. It was believed she had Marfan at first but they then decided it was Beal. She has many of the tell tale characteristics of Beal, and it has caused her severe scoliosis that has, to this day, forced her to have 9 surgeries in 8 years on her spine. My boyfriend has Marfan, but I don't know if he has scoliosis or not, but do know scoliosis is very common in Marfan.

My daughter has been diagnosed with Beals Syndrome. It is related to Marfins however we were told that Marfins does not involve a scoliosis, but that Beals Syndrome was the dianosis. Beals Syndrome has scoliosis involved, but is unlikely to affect the heart etc like Marfins.