Marfan syndrome

Discussion in 'Chit Chat' started by jemz2185, Jan 3, 2007.

  1. jemz2185

    jemz2185 New Member

    hey ther my names jema and (without soundng like an AA meeting)i have a condition called Marfan syndrome, im 21 and ive known about it all my life i have a long list of family members with the same condition, although my rock being my dad who had marfans and made me understand being different is special died wen i was 12 so i havnt had ne one to really chat to that understands the ins and outs etc, so just wundered if anyone out there has marfans or if they know of someone who wants to chat bout it

    thanx and happy new year

  2. paulmack

    paulmack New Member

    Pleased to "meet" you.Another fellow UK person here.
    Sorry to say that's the first I've heard of Marfan Syndrome but I did a Google search to learn a little about the condition.You'll find a lot of us on the Boards who don't even understand the ins & outs of our own conditions,whether it be Fibro,CFS,Arthritis or Marfans so you're definitely not alone,most of us can empathise with each other.
    A lot of us mess about on the chit chat board with quizzes,jokes & just stuff in general & I find it does take my mind off my problems for a while.
    So you'll find many of us here that can chat about anything,so hopefully you may find posting on the chitchat board may help.
    I know this may not help wi the Marfans but hope it helps a little.
    Best Wishes,Paul.
  3. joyfully

    joyfully New Member

    I was going to post about the importance of having your aorta checked by a cardiologist, but someone already beat me to it. DEFINITELY have this done. My only knowledge about this disease is from a one hour special on the PBS channel.

    My son was checked for this, but doesn't have it.

    Did you know there is a National Marfan Organization?

    I believe they would have more details about the specifics on this rather rare genetic disease/syndrome. Please come back and chit chat with us. We enjoy lots of company here. It is a great place with kind, caring, funny people.[This Message was Edited on 01/04/2007]
  4. jemz2185

    jemz2185 New Member

    i know of the syndrome from my dad but wen he died i thought i was gonna die to as silly as that sounds (i was 12) my heart valves are enlarged and i have been havin treatment also the lenses in my eyes r dislocated so only have vision some days and not others but havin surgery to fix that thanx for all ur support and will check that website out