I was researching some information about pre-implantation genetic testing for a member on another network, when I noticed that CMT is one of the conditions that can be tested for. Here is a link for more information, for those who are interested: http://www.reproductivegenetics.com/single-gene-disorder-tested/
So what does it mean for CMT ers?
It means that CMTers who wish to prevent passing the gene to their future children have a way to prevent it, if desired.
It seems that it is already too late. Quite a lot of us only find out we have got it after we have children and quite often grandchildren too.
Hopefully, someday gene therapy or stem cell therapy will help those who already have the condition.
I'm actually curious about this. My husband and I were trying for children before I was diagnosed this last March. Since my diagnosis we've stopped trying, but it's my understanding that they can only test for known CMT subtypes. Since I'm type 2, my neurologist suggested I wait a bit before doing gene testing because type 2 hasn't been mapped out as much as type 1. So I'm not sure that this would be useful to me right now...
Also, I've read that pregnancy can increase progression of the disease (not sure if it's hormone related or because of stress on the body). I posed this question on the CMTA Facebook group and it seemed that this was the case for most of the women who responded.
Hi Myma Jane,
Good to hear from you!
I'm certainly NOT the resident expert or a Physician, but spend a couple of years moderating the Fibromyalgia group, a very large group mostly comprised of young women. There are many theories and controversies about what Fibro is and isn't, but most of those gals went into remission during pregnancy and then as soon as they delivered, the illness came back with a vengeance! So makes me wonder if some of this is not hormone related!
Strange how pregnancy can change with different illnesses!
This implantation is hopefully a step in the right direction for CMT, it will hopefully give them a better understanding and a range of treatment options.
Wishing you well,