ANYONE BEEN DIAGNOSED WITH MARFAN'S SYNDROME

Discussion in 'Fibromyalgia Main Forum' started by stinker56, Oct 6, 2005.

  1. stinker56

    stinker56 New Member

    I have recently been diagnosed with Marfan Syndrome which is a connective tissue disease along with having FMS. The Marfan's has affected my joints along with eyes but could also cause heart and lung problems. I can't find a lot of info on this and was just wondering if I am alone in this?
    Any thoughts would be appreciated.
    Stinker56
  2. lauralea443

    lauralea443 New Member

    Please keep us posted.

    I'm sure someone will know about it.

    Laura

    PS when were you DX's
  3. ephemera

    ephemera New Member

    FYI, some marfans info can be found with sites on ehlers-danlos syndrome (EDS)
  4. dunnlb

    dunnlb New Member

    Marfan syndrome is an inherited disorder that affects the connective tissue of the heart and blood vessels (cardiovascular system). The musculoskeletal system (ligaments and muscles) and ocular system (eyes) are also affected. Major symptoms also include unusual height, large hands and feet, and involvement of the lungs. Symptoms vary greatly among affected individuals. Marfan syndrome is inherited as an autosomal dominant trait.
  5. jaltair

    jaltair New Member

    The National Marfan Foundation - put that in Google and you'll find all kinds of info and help.
  6. TXFMmom

    TXFMmom New Member

    Marfan can be a very, very serious disorder. The vast majority of the individuals with it suffer from Ascending or Descending Aortic problems, and IT SOMETIMES RUPTURES.

    They also can have other cardiac abnormalities such as cardiomyopathy.

    Some patients develop respiratory or pulmonary hypertension with it. YOU SHOULD BE CHECKED OUT THOROUGLY WITH ECHOCARDIOGRAMS AND YOUR MAJOR ARTERIAL SYSTEM, INCLUDING THE AORTA SHOULD BE CHECKED AND THIN CLOSELY MONITORED.

    Marfan's patients often suffer from sudden ruptures of the major vessels or cardiac irregularities and can have SUDDEN CARDIAC ARRESTS.

    I do not mean to frighten you, but this can be a very serious disorder.

    Often, the patients are tall, thin, have elongated fingers and hands, and seem to have lax joints.

    It is believed that Abraham Lincoln had Marfan's and that he would not have lived long, had he not been assassinated.

    You should see a specialist and have it thoroughly investigated and then closely monitored. Some individuals have to undergo aortic replacement due to the thinning and weaknesses in the vessel walls.
  7. angeldust

    angeldust New Member

    Hi stinker56

    CFS runs in my family, when my brother had cfs he was referred to a Marfan Syndrome Specialist in London - he was diagnosed as having a borderline case of Marfan's Syndrome -there are some definate overlaps between cfs/fms and Marfan's for some people.

    We are a tall skinny family, some of us have an arm span that is greater then our height, which is thought to be a marker for Marfan's. My brother is now completely recovered - so it definately wasn't Marfan's, we do wonder though if somewhere down our family line this syndrome might develop further.

    Does anyone else in your family have the same diagnosis?
  8. kellygirl

    kellygirl Member

    I first came across this disorder when I met one of my daughters friends who had it. She was a 3rd generation. The symptoms seem to progress with each generation. She and her brother recovered from ruptured aortas and are still both working. She has the features that you see with A. Lincoln the close-set eyes, the height, her knees bowed inward, the long fingers.