As you may know, this year I am focusing my fundraising in support of the CMT Association STAR initiative . CMT is a progressive degenerative neuromuscular disease. The CMT Association in the US is funding and supporting the search for a cure for (primarily) CMT1A, which impacts 1 in 5000 people, and along the way the research they are funding is sure to lead to follow on research and exciting initiatives in search for a cure for the many other forms of CMT. 1 in 2500 people is impacted by some form of CMT, making it the most common but probably least discussed neuromuscular condition there is…
I posted on one of my CMT forums that I was seeking people to share their experiences with CMT on my blog. I think it is important to share many stories – CMT impacts each individual so differently.
I was particularly excited that Courtney volunteered to share her story. Courtney is studying at the University of Wisconsin, and she has the amazing opportunity to be working with one of the world’s foremost researchers into CMT. She has offered to allow people to contact her via email (cutiedudie2002 [at] yahoo [dot] com) if you have any further questions – an amazing offer of openness and generosity.
Thank you Courtney for sharing your story, and for helping me as I seek to build awareness of CMT and support for the CMT STAR initiative to find a cure for CMT1A.
I was diagnosed with CMT1A based on a nerve conduction study and electromyography results in March 2009. It was a steep downhill at first, losing inches of feeling in my legs and arms a week. My feet were constantly fractured, usually too small to be seen on an x-ray, and walking became an issue. It took me twice as long for me to get anywhere, and I had to walk far across campus to get to my classes. I had PT over the summer, and got AFOs (ankle foot orthotics) fitted at the end of summer before I went back to college. I wasn’t sure how much I really needed them, but I was lucky I did because I could barely walk by winter break because of knee problems. Before I got the braces, no one knew anything was wrong even though I could clearly tell. Even after I got them, they are covered by pants so well that nobody knew unless I told them, and it was a touchy subject for a while so not many people did know. When I first started wearing shorts in the summer, I’m sure people were somewhat shocked even though nobody said anything at all. One girl did express concern because she thought I broke both my legs. So, walking down the street is still a little stressful because I can tell that people notice but are also polite and try not to look. It’s weird because I can walk fine now and I feel great but it’s just that a private issue is now available for the world to see.
When people ask me what’s wrong, I determine their level of interest and biology/health knowledge. If it is a casual thing, I just say it’s a nerve disorder that makes my ankles weak. But if it’s someone I know who would be interested to know the whole explanation behind it, or should know, it takes a while since I know a lot about it. Intelligent people usually stay quiet because it’s obvious that it is a long term thing, but sometimes it catches people off guard and they ask a dumb question like, “What happened to you?!”. Then it catches me off guard because I have to say “Nothing happened” but then still give my short explanation. When that happens, it’s a little awkward because I know I’m getting pity from it, which is not what I want.
The CMTA STAR program is important to me especially since I work with one of the top researchers on CMT. I have a feeling that I’m making a difference in some way and can contribute in some way to help along the understanding of neuroscience in general or a cure for this condition. I’m also learning a lot about biology and genetics that I don’t think I would have been able to learn otherwise. I don’t know if I should feel heroic or not, but I’m certain someone will feel inspired with what I’m doing. I’m doing it because I can, which is usually the only reason I need to keep going strong.
Getting used to living with this was a little difficult, and I am still working on the body image issues. I would say that the hardest part would be realizing that my perception of myself doesn’t have to include the word “disabled”, especially if I don’t feel that way. However, this came after I got the AFOs and was able to walk properly once more and gained a lot of muscle to adjust to them. Another issue is that when I meet new people, I usually don’t like to have them know because I want to make an impression to them that just is my personality without having any pity or unnecessary concern come into play. But then, they don’t know, so a “reveal” of sorts can be a stressful. So 3 phrases that would help anyone through something like this would be:
You’re not disabled unless you want to be.
People will care if you give them the chance.
You’re still beautiful in every way.
Note: The underlined pieces I have added to Courtney’s words, for emphasis. It is amazing how much we think alike, even though we are separated by distance, age and severity of CMT. I really appreciate Courtney’s honest and open contribution to my blog.
If you would like to donate to support the CMT STAR initiative, and the quest to find a cure for CMT, you can do so via my secure giving pages (direct to the CMTA). To keep the STAR intiative financed, the CMTA is seeking $1 million in donations this year alone. Any amount will be gratefully received and will help to reaching this huge goal, and a cure for so many.