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marfan's syndrome teenager

maxine10
2 Recommendations

Hi I was just wondering if their is anyone out their who has just had their child or themselves diagnosed with marfans the hospital is questioning if my son of 15 has marfans syndrome. I feel very lucky that he is either questioning it or ruling it out as it is a very rare and hard disease/condition to diagnose. I would like to try and find out what will happen next as my son has a learning disability and I like to know what is going to happen so if I need to tell him things

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Surgery Marfan syndrome

4 replies

maxine10

Does anyone know what this condition is and what will happen next????

pegasus325

Since I had never heard of Marfan's syndrome, I looked on line and found there is a website devoted to people who are suffering with this illness. The URL is www.marfan.org and I suggest you check it out before you try to talk to your son. I copied the following from their website: "Mo" motion picture is now available on iTunes and Amazon.com.
"Mo" is based on the true story of a boy with Marfan syndrome growing up on the south shore of Long Island, New York. How his parents support him, how his wacky brother keeps him laughing, and how his friends help him to escape. Watch the movie to see how he copes with daily life and prepares for heart surgery. It's a story you will never forget.

maxine10

Thanks for the reply. Not had a chance to chek it out but will do. Let you know how I get on.

cheers

Maxine xx

Quacky

Hi all
There is a very good possibility my son has Marfan Syndrome. He is very very thin with spider like fingers. His wing span is longer than his height. He had surgery to fix a pectus deformity. He also is checked once a year to make sure he doesnt have a heart prolapse. I cant think of anything else except he does have the long face and a high palat. If anyone has more info let me know. His surgeon suggested he go to a geneticist.
Thanks in advance for any ideas

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