Marfans syndrome

chargerman

Just wondering if anyone else out there has marfans? I have it. one in 5,000 people have it so not expecting many replies

Wereghost

Yup. Diagnosed aged 13 or 14. My particular mix of symptoms excludes any significant heart problems (fortunately) but includes:

- long limbs (I''m just under 6' 6" tall and very thin, with a 40-inch inside leg measurement),

- inability to put on significant muscle weight (154lbs, I think), and

- (up until relatively recently) extreme short-sightedness. Had to have the lenses in my eyes replaced as I was developing severe cataracts. Now I'm kind of long-sighted, though contrast vision is still a bit sh!te.

chargerman

Thanks for the reply. I find that info amazing for the following reason:
-I too am 6 foot 6, long limbs and very skinny
-can not put on weight to save my life about 160 lb. Went to gym all last year 3-4 evenings a week but didnt gain any muscle
- as for eye sight, was always badly short sighted. up until maybe 18 months ago my lens dislocated and now im long sighted and the sight is a lot better.
-as for heart problems, well this is where it goes downhill. I was always ok until 6 weeks ago, the aortic root enlarged and had to have surgery. All went well.

Didnt think anyone would reply. Its weird our symptons are so similar

garbanzo

My best buddy has it. Does that count ....?

chargerman

Thanks for that garbanzo, was curious as to see if many others had similar symptons as me. Im really getting interested in it now as its only in last few weeks that problems arose. I was diagnosed at 10 or 11

Wereghost

chargerman wrote: »

Thanks for the reply. I find that info amazing for the following reason:
-I too am 6 foot 6, long limbs and very skinny
-can not put on weight to save my life about 160 lb. Went to gym all last year 3-4 evenings a week but didnt gain any muscle
- as for eye sight, was always badly short sighted. up until maybe 18 months ago my lens dislocated and now im long sighted and the sight is a lot better.
-as for heart problems, well this is where it goes downhill. I was always ok until 6 weeks ago, the aortic root enlarged and had to have surgery. All went well.

Didnt think anyone would reply. Its weird our symptons are so similar

Sorry to hear about the heart problems. Glad to hear that you're doing okay. That sounds like one hell of a thing to have to go through.

I don't think I've been inside a gym in my life (I'm 40) and from the above I'm not gonna start too soon either! I have from time to time used weights at home, but to no avail. It seems that since Marfan's affects the elasticity of the muscles, some of us can only realistically achieve a relatively slender build. Dang!

That dislocated lens thing sounds way bizarre, but I guess it's a vast improvement.

chargerman

Scrawny71 wrote: »

Sorry to hear about the heart problems. Glad to hear that you're doing okay. That sounds like one hell of a thing to have to go through.

I don't think I've been inside a gym in my life (I'm 40) and from the above I'm not gonna start too soon either! I have from time to time used weights at home, but to no avail. It seems that since Marfan's affects the elasticity of the muscles, some of us can only realistically achieve a relatively slender build. Dang!

That dislocated lens thing sounds way bizarre, but I guess it's a vast improvement.

Ya the dislocated lens was bizzare but in the end worked out in my favour. I am meeting a specialist tomorrow so I will get more info

goulders

just looked in and saw marfans
like others I have marfaniod symptoms but no heart problem.
I am 6 10
thin no possability of putting on weight
detached retnas
pnumothorax both sides
high palet
pidgion chest
it is important for women to be tested if pregnant
there was a marfans society, dont know if they still to gether
I am regularly asked to go in for doctor exams and have done this 4 times
email me and we can have chat
bluerosewaterford@gmail.com