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CF and Marfan Syndrome?

A

anonymous

New member
Oh, and my husband's bronchiectasis was VERY CF-like. His docs treated it just like CF except for the enzymes.
And during the last 5 years or so his digestive problems were very CF-like.
But he'd been test several times for CF and it never came up positive.
While the Marfan's was diagnosed early early. Still he never had an actual aortic aneurism and his aorta was still "just" within "no surgery yet" range when he died at 59 and his eyes were OK.
But he had just about everything else you can have with Marfans including mitral valve prolapse, scoliosis, dural ectasia (balooning of the dura/covering of the spinal cord so that those balloons came out between his vertebrae and put pressure on nerves and such), stretch marks from nothing, lax joints, the MASS body type (long arms, legs, torso), etc.
-LisaV
 
A

anonymous

New member
Oh, and my husband's bronchiectasis was VERY CF-like. His docs treated it just like CF except for the enzymes.
And during the last 5 years or so his digestive problems were very CF-like.
But he'd been test several times for CF and it never came up positive.
While the Marfan's was diagnosed early early. Still he never had an actual aortic aneurism and his aorta was still "just" within "no surgery yet" range when he died at 59 and his eyes were OK.
But he had just about everything else you can have with Marfans including mitral valve prolapse, scoliosis, dural ectasia (balooning of the dura/covering of the spinal cord so that those balloons came out between his vertebrae and put pressure on nerves and such), stretch marks from nothing, lax joints, the MASS body type (long arms, legs, torso), etc.
-LisaV
 
A

anonymous

New member
characteristics of Marfan Syndrome. <a target=new class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4
">http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4
</a>Since there's no genetic marker identified yet, they just have a checklist (buried in this site) that they check off.
If you have a direct-line family member (like mom or dad) with Marfan and they can check off 2 body systems, they say you have it.
Without the direct-line connection, you have to show characteristics in 3 body systems before they say you have it.

I read recently that scoliosis was associated with CF too. Is this true? I hadn't realized that before.....

-LisaV
 
A

anonymous

New member
characteristics of Marfan Syndrome. <a target=new class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4
">http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4
</a>Since there's no genetic marker identified yet, they just have a checklist (buried in this site) that they check off.
If you have a direct-line family member (like mom or dad) with Marfan and they can check off 2 body systems, they say you have it.
Without the direct-line connection, you have to show characteristics in 3 body systems before they say you have it.

I read recently that scoliosis was associated with CF too. Is this true? I hadn't realized that before.....

-LisaV
 
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