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Rotaract Club of University of Canberra

Rotaract Club of University of Canberra
Hi everyone,

It’s Steph here, I’m currently the Secretary for RCUC and because today is rare diseases day I wanted to share with you all something that has impacted me for my entire and that is CMT. CMT stands for Charcot Marie Tooth which is a genetic and degenerative nerve disease with over 90 types and subtypes, affecting 1 in 2500 people around the world. CMT causes the peripheral nerves to deteriorate and that leads to a list of symptoms including hammer toes, high arches, poor motor skills and weakness in arms and legs. Although CMT affects so many people it is very common for a misdiagnosis due to how many people don’t know about the disease.

At school I couldn’t do physical activity as easily as my peers and I spent a lot of time getting first aid because I would fall over all the time. In 2008 I was diagnosed with CMT. I was told that there isn’t really much they could do at the time but eventually I might need orthotics, AFO’s or surgery. I was told that there is no way to predict how CMT will affect me as it progresses and there is no cure, surgery or mobility aids will likely become an option. In 2011 I had my first operation which left me with casts on both legs for 8 weeks. I had another operation again in 2016 and that meant I had pins sticking out of 8 toes for 5 weeks.

CMT might make life a bit more challenging because I get tired a lot faster than normal but I can still do whatever I want to do it might just take me a bit longer or I might need a bit of help. I was told a long time ago “CMT doesn’t define you so embrace every situation with a positive attitude”. I’ve been on CMT youth camps since 2014 and I’ve seen people do all kinds of things they didn’t think they would do because of CMT.

CMT might not have a huge impact on me day to day but because of CMT there are so many opportunities that I’ve been able to take to get to where I am today, to challenge myself and to help others step up to new challenges. While CMT has been a problem at times it has become a part of my life that has enabled me to grow so much and appreciate so much more than I would have without it.

As more people learn about CMT it means life becomes easier for people like me who have the condition. I’ve added a short video that explains a bit more about CMT. If you want to know more about CMT please contact me, most people with conditions like CMT would rather answer any questions you have about how they handle their own challenges.

– Steph

https://www.youtube.com/watch?v=m2gsY-_JAaE
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February 28, 2019 at 09:32PM