hi frogspor... i think the answer is quite simple.. its just plain mutation..thats how it started..n in families where there is no history of it.. this is...
I think you are posing the question of where and when did the first case of FSHD occur looking back infinitely into history. This also begs the question of...
Want to participate in an event to benefit FSH? How about one on a holiday weekend in a resort area? Hi, I'm Rich Holmes of Brewster, MA, and I'm planning a...
What a wonderful event to help us in our fight against our dreadful disease. Good for you! Sign me up for a tee shirt or something. Google says that Columbus...
The D4Z4 Macrosatellite Repeat Acts as a CTCF and A-Type Lamins- Dependent Insulator in Facio-Scapulo-Humeral Dystrophy.Ottaviani A, Rival-Gervier S, Boussouar...
I sometimes like decoding this stuff. Let me give it a try and see what others think. It might be a proverbial chasing of the nondomesticated singular geese...
Love it! Can't tell whether it is accurate or not, but love the "down home" language and simple explanation of what it says!  Thanks so much for your...
Hi all Well, it seems we are going somewhere... a small step at at time. Robert http://www.sciencedaily.com/releases/2009/02/090227112303.htm New Safer Way...
OK, this is not especailly healthy, but it's yummy. It's main bonus is in the preparation. It doesn't require as lot of tiring hand and arm motion, and once...
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...
Genetic mutations are quite common. We know some of the causes of genetic mutations..... but many, probably most, are still mysterious. The thing that...
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...
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...
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:...
Hi everyone! It's Diane from Chicago. Just wanted everyone to know that Caylee's FSH has been progressing rapidly. We will be getting fit for a power chair on...
... 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...
... I'm so sorry to hear your daughter is progressing rapidly. My daughter uses a pediatric SN stroller right now for walks.She isn't as bad but the back is...
You should have the benefit of working with an occupational therapist who is experienced in buildng a power chair for small children. Think about how you will...
My 19 year old son was diagnosed with FSH at age 13 when he was in the 8th grade. He is moderately affected, primarily in the arms and upper body but has been...
Hi Diane, Angela in Texas!! My daughter has a Quantum 650 power chair. It raises and tilts, and has about 5 speeds that are easy to adjust. The battery, once...
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