Ambassador

I've struggled with CMT my entire life but I wasn't diagnosed until my 20s. I became my Mum's carer at around 10 years old, she suffered from CMT very badly and ended up with both legs amputated. My childhood wasn't the easiest for many reasons. Being a young carer, helping with my siblings, being bullied and my relationship with my father was difficult. I also lost my Grandmother at a young age and she was my entire world. I was diagnosed with depression at 15 and struggled with self harm in my teenage years.
I went to university to do archaeology and ended up finding live sound, Jiu jitsu and a fiancé (eventually!) As I continued to do more with 3 jobs, a full time degree, the president of a high impact sport (Jiu jitsu) and doing a couple of other sports, volunteering, having a radio show and a social life... My symptoms increased rapidly. I ended up having surgery on my ankle around 21, thus bringing my first CMT diagnosis. The next few years went by in a blur of surgeries and missing out on life and from there my disease, looking back, feels like it went downhill rapidly. I had neurologist after neurologist sit and tell me I didn't have CMT because I didn't have a genetic diagnosis then sit there and look sheepish when my nerve conductivity tests came back with a CMT diagnosis (4 in total.) Fast forward to the day after my 31st birthday and I finally received a genetic diagnosis! But now I'm using a walking stick and my treatment has been on hold since covid and my neurologist has gone AWOL. I lost my Mum to lung cancer in 2019 and that put me in a deep depression, music, my fiancé and friends brought me back to life. After this dark period I decided I needed to move forward and I wanted to make a difference even if it was in only one other person's life. I became an ambassador for the CMT Research Foundation and honestly it is the most fulfilling thing I've ever done. I am so lucky to have this chance. In my spare time when I am well enough I produce music and create content.