I am 33 and just got diagnosed with FSHD last Feb. My husband and I have four
children and this has been a blow to me, because I am not ready to "stop" having
children. The Dr.'s say that this disease can be passed to the children, so we
have been very careful not to get pregnant, again. Does anyone have opinions
about having the children tested to see IF any of them have acquired the
disease? Or if this has kept you and your family from growing? Would love to
hear from others in the same boat as we are now in. Amanda
I am 33 and just got diagnosed with FSHD last Feb. My husband and I have four children and this has been a blow to me, because I am not ready to "stop" having...
I was diagnosed with FHS shortly after i was born. I am 28. I had my son tested to see if he had any form of MD. The Dr at the MD clinic wants me tested again...
Hi, I'm a 33 year old mom of two. My 18 month old started showing hypotonia at 3 months old which lead to many doctors and lots of testing. Because my...
Hi Jamie, All I want to say is that I really admire your stand on having children when you know what the chances are that they would have FSHD. Jeri...
Thank you Jerri. However, for me it was not so much a choice with my first child as a done deal. By the time my husband and I got aroung to talking about it,...
Hi, Maryann Thank you very much for your post. It is so closed to what seems to be very important to my daughter Anna. She is 20 years old, was diagnosed with ...
Thanks for writing back, Jaime! I just found this group, and find it very comforting to talk with other people who can relate to this disease.  To answer...
Hi, This could be lengthy. Please email me for my My cell number if you want to chat. I live in Dallas and can usually talk around 9PM when the kids are in...
This has been discussed on the forum, and there are many different views and opinions, it is an extremely personal choice. My Mother had a very similar...
Thanks for emailing me back, Maryann! Your story is very inspiring! I am told that my case of FSH is one of the mildest forms, but as time is marching on,...
Hi Maryann, I just wanted to thank you for your post. I am in my mid-twenties and although I am single without children right now, I still struggle with the...
Hi Amanda, I'm sorry you're going through this. I was in your shoes about 18 months ago, have a look at the message I posted here about my dilemma at the time:...
... Our peditrition won't test my kids until they have signs. My 3 year old was tested and was positive for FSHD. Personally If I could go back I would have...
Thanks all for sharing. I am 37 and not a mother ... yet. I have FSH, was diagnosed at 21. I made the decision not to try and have children because of the...
Zen Girl
zengirl13@...
Mar 5, 2009 6:53 pm
Amanda, We had a child and were pregnant with our second when my husband was diagnosed with FSH. The hardest part for him to accept was the realization that...
I too feel the same way and my husband also blames himself. There are alot of people out there that give birth and have children with down syndrome, autism,...
Welcome, Amanda. Good to have you with us. Please come back often. Paul, the geezer in Florida, who again says: "Women - the weaker sex? HA! Whoever...
What an amazing group of women we have on here. We're so lucky to have all you sisters to share thoughts with. Thanks. [Non-text portions of this message have...
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