- Charcot-Marie-Tooth Disease
- Interviews
Dawn's interview
How did all start?
I was diagnosed almost 2 years ago. I have always had roaming numbness in my limbs since I was a teen. My father was diagnosed with CMT almost 30 years ago. However, back then they claimed he couldn't pass on the gene mutation to daughters only sons. So we all thought I was in the clear. Then, about 3 years ago My right leg started to go numb. Couldn't feel it and unlike before it didn't go away. It got worse. I started to loose mobility in my right foot, having foot drop and falling way more than I ever had. Finally saw a neurologist and the testing done and she concluded that I was experiencing the same symptoms as my father. Saw neurologists at the University of Aushwitz in Co and sure enough they came to the same conclusion. Since then, I have had to start wearing an AFO on my right leg. And my left leg is starting to go numb as well. The pressure palsy is getting worse and I have trouble sleeping at night because in have to constantly be moving around. I take meds and am working on exercises to keep what muscle mass I have and what mobility I have. Some days are harder than others. In have my Dad to look for when it's hard and my boys to keep me inspired and active.
Do you already have a diagnosis? How long did it take you to get it?
It took 8 months for the diagnosis. In have yet to get genetic testing due to insurance though.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology and physical therapy.
What has been the most useful thing for you so far?
Physical therapy.
What have been your biggest difficulties?
Menally dealing with the fact my life is now different.
How has your social and family environment reacted? Have your social or family relationships changed?
Most family are supportive. My boys have had to take on extra duties to help me out. I have a hard time keeping a physical job, so my husband is working his tail off to provide. It has been hard for him to see me deteriorate in a sense. But he is my biggest supporter.
What things have you stopped doing?
Nothing! I do as much as I can when I can!
What do you think about the future?
Not sure. One day at a time.
So far, which years have been the best years in your life? What have you done during them?
My whole life has been the best years of my life. CMT will not change that in the least.
What would you like to do if you didn’t have your condition?
Still advocate for CMT because of my father.
If you had to describe your life in a sentence, what would it be?
Always Smile Big!
Finally, what advice would you give to a person in a similar situation?
Seems like you will not make it through, but you will. Never give up. Look on the bright side. Focus on what you can do not what you can't. Always Smile Big!
