Marfan Syndrome Support Group

Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. This may produce shortness of breath, an irregular pulse, and undue tiredness.

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  • Hi there. I have just joined as a member. just saying Hi and sharing my story. I am a Nutritionist and was diagnosed with MFS at age 20 (long before I studied nutrition) which explained and clarified alot! And came with its own set of emotional difficulties. Now I am 51 and have got a handle on so much in terms of my body, my health and my mind and emotions! I am so grateful that Pretty much...
  • Just looking for an opinion from someone who has the condition or someone knows a bit aboutI think I might have Marfan's, I had a doctor suggest it, and i asked my cardiologist, he said I had the long fingers but not the heart issues, but he told me I had trace leakage in 2 of my heart valves. I'm 6'1 175lbs but look slim, really flexible, using my other hand I can bend my thumb competely to my...
  • Hello, I'm almost 7 weeks post op from an Aortic Dissection I was blindsided by & almost died from. My Cardiothoracic surgeon told me I have a connective tissue disorder that accounts for it and believes it is Marfan's. I have not had anyone else diagnose me and am little surprised I guess. I had Pectus Excavatum (had surgery to correct it), hernia (surgery to correct it), cyst on my ovary (it...
  • deleted_user

    admitting the truth

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    Last week, I went for my annual aorta check. It's not normal anymore. I've always known I was at risk but there was reason to hope for a while. Sure, I have the screwed up gene but it wasn't really affecting me. I'm flexible but I never reached the 6 foot plus height of my mother or most of the Marfan's cousins. It's a large extended family and you can pick them out at the family reunion, by...
  • deleted_user

    grieving

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    My mother unexpectedly passed away January 11, 2012 from heart complications related to her Marfans. She was 62, and my best friend. I guess I'm here to find out more about Marfans, get support, and be support.
  • Hello everyone,This is my first time using a site like this so hopefully good results will come from it. I am a 22-year old male from Michigan who is pursuing a bachelors degree in mechanical engineering. I was diagnosed with idiopathic scoliosis at age 12 and have been treating it with irregular chiropractor visits ever since. Besides for scoliosis, I have almost no medical problems or allergies...
  • deleted_user

    clothes

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    being 6'7 and 130 lbs is a bit hard to find clothes... any thoughts about what i should do? im considering custom suits and shirts,im male, and im sick of having "high waters" pants lol, and i still want to look fashionable... any thoughts or things not to do would be apprciated
  • My son has been diagnosed with Marfan's since he was approx. 15 yrs. old. He will soon be 20 yrs. old. My question is this. I have heard that young men can continue to grow until they are almost 24 or 25??I have concerns about this, because he is already 6 feet and 6 1/2 inches tall and he only weighs 143 pounds. Doesn't matter how much he eats...never seems to gain any significant amount of...
  • tlc0u

    New, just saying hello

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    Hello all, My son was diagnosed with Marfanoid type habitus, assuming Marfan Syndrome in lay terms. He has had a hard time gaining weight, he is 14 and 6 foot 2 already a foot taller than me. He doesn't seem to have to much of an indent in his chest, but there is a small one. He has really long limbs and fingers. He has hypermobility and problems with his knees. To me he has a hard time with...
  • I decided to create a few youtube videos for a few reasons. To demonstrate what the Social Security Administration considers "Normal Range of Motion," spread awareness of Ehlers Danlos Syndrome - Hypermobility Type (a rare connective tissue disorder similar to Marfan Syndrome), and to show people what dislocations/subluxations look like. Most physicians are unaware that hypermobility basically...
  • deleted_user

    metabolism.

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    I'm new here, found out about a year ago did the research then but my eating/weight gaining has been a large goal of mine this summer...that being said, does our metabolism ever slow down?My friends look at me in awe when I am able to out eat anyone I know and being 20-30 pounds under weight.
  • deleted_user

    weight gain

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    I'm to skinny and pectus excavatum on my chest makes me not to take of my shirt...I am 21 and my weight is 106lbs with a height of 6'...Is there any ways i can increase my weight and make increase my body size.
  • Hi,I've just been researching Marfan's and related disorders for a short while now, and I haven't seen much on people with kidney anomalies.My cousins who all show signs of Marfan's are also the same side of the family with three and four kidneys.In the past, doctors have told me that many people live their whole lives not knowing they carry this trait. I thought maybe now with more CT scans and...
  • My husband saw a doctor a few years ago, to become established at a new practice.. The doctor talked about marfans the entire time my husband was there.. My husband came home frustrated and asked "wtf is marfans syndrome?" I researched it, and he threw it off like the doc was crazy, and never went back.Well I have a friend who's son is being evaluated for marfans syndrome.. it got me to...
  • deleted_user

    Heart Ache

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    Hey guys,I'm 25 and I have Marfans. Very occasionally I used to get an ache in my chest. Usually it happens at night when I'm laying in bed, but if I roll over, it stops. Lately it's been happening more regularly (3 times in the last week...)I doubt it's too serious (or it wouldn't go away!). Any thoughts? Megs :)