A bit of background.

As a child I didn’t know why I tripped and fell so much. I figured I was just a clutz. Through the years I learned in my family, on my mothers side, that many were just like me, and we had this ‘thing’ but it had no name. It caused us to have weaknesses in our legs, ankles, hands and arms.

Finally a cousin of mine went to a doctor and was diagnosed with Charcot-Marie-Tooth Disease, we had a name! But man what a name! CMT is an autosomal dominant disease, and to date I have counted, some verified and many unverified with DNA testing but verified via family, 28 people in our family with CMT! As a genealogist I have traced it back through 4 generations.

As the years have gone by, every time I have tried to explain to people what was wrong with me I’d get these funny looks.. ‘Tooth? Seriously? You need to see a dentist?’ Even one of the ‘specaialists’ I saw when I finally had to go apply for disability said they saw no reason for me to get disability due to DENTAL issues. Sheesh, Google is your freind dude!

After I had my two sons we had a doctor do the whole DNA test thing for us and I was formally diagnosed with CMT 1-A AND CMT 1-B. So I have 2 types of the same disease! To make it even more fun each of my sons has a diferent type of CMT. BUT the geneticist said they have no idea if my having 2 types of the same disease mutated and my sons may have an entirely different type of the disease they inherited from me. Oh boy!

Understanding the disease can be a bit involved. Basically in our case(s) it boils down to one being childhood onset of the disease with worsening symptoms as we grow up and older, the other is adult onset, worsening as we grow older. These days there are even subsets of these and more types diagnosed. I’ll not go into them, but anyone interested can read more on the site cmtausa.org.

One thing our geneticist marveled at was how well adapted we are with having this disease. We run into a problem caused by CMT and try to figure out how to work around it.

I have often thought it would be cool to be able to share the things we have come up with as we learned to adapt to our disease as it has progressed. And since I recently got bitten by the crafting bug, I have had to learn yet more adaptations. My most recent find (a tantalising info of an upcoming post there!) had me thinking about sharing yet again, and so here I am!