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12 | InTouch FEBRUARY 2022 My name is Nathan Francis and I have Charcot Marie Tooth Disease (CMT). I’m 34 but have always had symptoms of CMT that were unfortunately never picked up as a child. I had issues with my feet and got very painful leg muscles when I ran or even walked long distances. My hands got sore after writing for too long in class too. For me, the condition was slow to progress during childhood – CMT tends to hit hard and fast in your 30s. Over the last couple of years my body has started to decline, and I was in more discomfort due to muscle loss and nerve pain, but I didn’t know why. So, after doing my own research I went and had a chat with my doctor and told him that I thought I may have CMT. After he had a look online, he agreed and referred me to Nelson Hospital. Within a few months, I had seen a neurologist and had special genetic blood work done to also rule out other conditions. Then after a few months I had the official diagnosis of CMT2 subtype Z (CMT2Z). Before CMT symptoms started to hit me hard, I was a Security Officer. I used to do high risk tasks from protecting Government staff to driving cash trucks. I even used to do karate and trained up to 30 hours a week in my early 20s. However, now I am unable to work due to my health and unfortunately, I had to stop driving for the safety of myself and others. CMT has made it very hard for me to do many daily tasks due to pain and other issues it has caused my body. I am soon to be fitted for a wheelchair as it’s just too hard to get around. I overcome many obstacles around home by using adaptive tools where needed and possible, and I pace out the day, so I don’t overdo it. I am very lucky to have the most amazing wife, Cathy. We met seven years ago and have been madly in love ever since. She is my rock and has been by my side right through the fast and heavy progression. She has seen me go from being able bodied and working in a fast-paced job to struggling to do basic tasks. I am also very lucky to have an amazing family who are always there to help me when needed even though they have very busy lives themselves. They have been there when I needed someone to rant too, or to help me get to appointments. Family is very important to me and a great support network. Another support network I have is a group on Facebook – C.M.T New Zealand (Charcot Marie Tooth Disease). I took over ownership of this group in 2020 and since then, I have networked with other CMT groups around the world and grown the NZ group substantially. MDANZ have also been really supportive especially my Fieldworker in Nelson, Jane. She is fantastic. I have also applied for some funding from the Bradley Jenkin Memorial Fund for a device to help enable me to be as independent as I can. I also thoroughly enjoy the In Touch magazines, and look forward to the local MDA coffee groups. I have my bad days; however, I’m learning what my limitations are. I can’t change my condition and all I can do is live the best life that I possibly can. My advice to other members with CMT is to be your own advocate and stand up for your rights. I also think it’s important to make use of support networks whether that’s family, friends or through MDA. YOUR CONDITION IN REVIEW Doing his own research and being his own advocate led to Nathan Francis’ CMT diagnosis. He writes about living with the rapid progressing condition and how he copes. Helping others with my condition gives me strength! The CMT New Zealand support group on Facebook is called C.M.T New Zealand (Charcot Marie Tooth Disease) www.facebook.com/ groups/1153510888101577 Nathan, Cathy and Sasha (11).