I'm desperately searching for answers for my husband, who's been diagnosed with a very rare neuropathy, called Charcot Marie Tooth or CMT. He was diagnosed about 7 years ago and it has affected his legs, calves and feet. He's having a hard time walking now. Even though we know it's a progressive disease, we know little more then that. One things for sure...it's getting worse. He's losing his ability to walk. He's such a vital man and to watch this happen to him brings me great pain and sadness.
Ed, was adopted long before you could find out who your biological parents were at 18. We have no way to get his family medical history. Believe me, we've tried more then once to get the records unsealed but, so far, no luck.
I would love to be able to find out what new treatments, exercise regimes, supplement programs etc...are out there. I'd love to know what others are doing or taking that's helping them. I'm afraid that he's going to lose his ability to walk at some point if we don't find someone, a doctor, a survivor, out there who knows this horrible condition. Any research or science information anyone can give us would be greatly appreciated as well.
This is just another example of why I created EmpowHer. I know others are faced with this condition or have loved ones who may suffer with it. Maybe you know of a neighbor or friend who's being treated for CMT.
Any help you can give us will be welcome and most appreciated. I think EmpowHer is going go help Ed. In fact, I know there are women out there who are going to help us get the answers we need. I'm sure of it.
Thank you in advance for any help you can give us. Please share this post with others. Maybe they'll know someone with this condition and can tell us how to better manage it.
Best in health,
Michelle