marfans

when we were younger my oldest sister was told she had marfans now my younger sister has been told she may have marfans and there waiting for her blood results to confirm it i was told that i have marfans behind my right eye which i am blind in but the doctor said that unless i have a heart problem by the age of 27 i don't have it is this right i am taller than both my sisters at 6ft and my arm span is 6ft 1 i sometimes get pains in my spine and knees and a few weeks ago when i was walking my kid to school my lower legs and ankles felt like they were burning away from my bone i also have got a cyst in my neck am doulble jointed have a long thin face and am very slim a size 10 please help me by giving me your opinion  THANKS

[6FT2]

Hi Sartigs,

I only found out that I have Marfan's when I was 28, and I am 29 now, but I have come to know quite a bit about it.  I would most definately have to say that you have "minor" and/or "emergent" Marfan's (Emergent meaning it is only now becoming apparent).  I would also suggest that you DO get a cardio exam at least once a year, as well as a slit-lamp test (Especially with your one eye being blind).

Having family with Marfan's makes for a much greater probability that you too have it, especially with your "Marfanoid Features".  There is a saying in the Marfan's community...  "Rather a false positive than a false negative".

I don't think the medical community has enough resources and/or have done enough studies into the condition to know just how badly it affects a person.  Just because you only have musculo-skeletal and visual complications and no cardio-vascular complications, doesn't make it any less painfull and difficult to deal with as someone with full blown Marfan's.  

The problem, as I see it, is that the medical profession focuses a lot on the cardio-vascular side of the condition and very little on the other two areas...the two that causes the most pain and discomfort...  The cardio-vascular side can silently kill you...but the other two will drive you to suicide from pain/discomfort...

Take care of your self hon, and let me know if you have any questions or need any support.

[marialou]

have you had full bloods done to varify marfans as there are so many syndromes that could be confused as?