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Old 02-12-2013, 04:42 PM   #1
Join Date: Feb 2013
Location: New York
Posts: 3
PK860 HB User
collagen vi spectrum disorder


I am new to this board and am posting for the first time.

I have Bethlem Myopathy (or as my doctors prefer to call it, a collagen vi spectrum disorder). I have had contractures and general muscle weakness my whole life, but was only correctly diagnosed this past year through genetic testing. I do not experience muscle pain or fatigue; there are just some things I cannot do easily, like climb stairs without leaning heavily on a railing or stand from a low chair without leaning on something.

I am curious to learn others' experiences. In addition, my husband and I are planning to start a family (we are undergoing PGD, which should prevent passing along the condition), and I am very interested to learn about other womens' experiences with pregnancy.

Thanks so much!

Last edited by Administrator; 02-28-2013 at 05:02 PM.

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