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I love what you are trying to do. Thanks so much for all your effort on behalf of those with Myotonia Congentia. What you might want to add is that the over developed muscles can cause parents with young Thomsen Disease children severe consequences. We had a doctor when my son was only about 4 or 5 that we went to so we can find help about what was going on with our child tell us that he was going to report us to the state for allowing our child to pump weights. Imagine that. My son had these muscles that we had no clue where they were coming from and a doctor was going to report us to the state for child abuse.
Wow, mcboarder - That is pretty outrageous! And it's the exact opposite of my situation when I was a kid - how things have changed. Now, any anomaly in a child is immediately cause for suspicion about the parents. When I was a very little girl, and my muscles were pretty enormous, people used to stop my mom on the street, to ask if I was a dancer... and the doctor noticed nothing unusual about me at all!! Good grief! : ) Lois
yeah - especially for women!! i e-mailed you some of my thoughts, as usual! LOL - Thanks!!! lois
I put a link to the outline on the website at www.MyotoniaCongenita.org.
I was exited when I saw in Quest that you were looking at doing a documentary. There is so much information that is not correct on the disease. It is frustrating at the way you can be treated by health care proffessionals at times.
I look forward to hearing about the progress of this journey you are looking to embark on. Thank you.
Hi Kristie - Be sure to post what state or country you are from, so if it isn't already on the list, it can be added... we want to know how many places this forum reaches! The documentary project is so exciting - Jim is biting off A LOT!!! lois
I hope they're interested in your subject, it would make such a change to see something positive on MC; in fact it would make a change to see SOMETHING on MC!
Jim I think this is great! One of the most frustrating things about this disease is all the efforts to hide it or when we reveal it then we are misunderstood. This has been bottled up inside us for too long...it is time to feel understood or at least feel like there are efforts made toward this. Awesome!!
Type of Myotonia: Beckers
Country: United States of America