MarfanLife.net | News blog

St. Paul Pioneer Press | 01/30/2007 | Tip of the day: What is Marfan Syndrome
Marfan syndrome is a genetic disorder of the connective tissue. People with the condition have disproportionately long arms and legs, indented or protruding chest bones, curves in their spine and eye problems.

The National Marfan Foundation wants to help teenagers with this condition. It is offering a free booklet, “Marfan Syndrome: A Guide for Teens.”

Teen needs to talk to doctor about playing sports
We just found out that our 16-year-old son has Marfan syndrome. We took him to see a cardiologist, who told him that he cannot do any strenuous type activities or sports. Do you think he should stop playing sports?

THE SIGNS OF MARFAN’S SYNDROME ARE HIGHLY VARIABLE

DEAR DR. DONOHUE: Please tell me something about Marfan’s syndrome. I think I know someone who has it. I can tell just by looking at him. Is it serious? Where does it come from? Is it fatal? Is there a cure for it? — Anon.

Press-Telegram - The story of a boy named Mo
“Life’s a blast until somebody notices you’re different.”

That’s the tag line for an upcoming film called “Mo.” It goes into production later this month on Long Island.

“DEAR DR. DONOHUE: My son is 32. He is 6 feet 8 inches tall. Both my husband and I are over 6 feet. When he was in the Army, someone told him he might have Marfan’s syndrome. We have searched on the Internet and have found little information about this. Would you fill in the details? — W.R.”

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Dr. Donohue- 11/26/05: “DEAR DR. DONOHUE: I am the guardian of a 13-year-old boy who shows signs of Marfan’s syndrome. How can I find out if he really has it? He is 6 feet tall, very thin and has long fingers and toes. — K.M.”

RedNova News - Health - Dear Doc: June 6, 2005: “Q. several weeks ago, my 36 year-old son had a series of three strokes. He was taken to Ward 25 in the James Cook Hospital, the cardiology and neurology teams were wonderful and explained everything to me.

Another doctor who was looking after my son told me he was not in proportion. His arms were longer than they should have been, also his hands were the same. This I did not understand.

Would it be possible for you to tell me anything about this?”

Marfan syndrome not simple to diagnose: “Q: I saw a television special about Marfan syndrome and now think my 11-year-old daughter might have it because she has many of the traits described. How can I put my mind at ease? Is there a test for this?”