- Charcot-Marie-Tooth Disease
- Interviews
Suzan's interview
How did all start?
I was always a clumsy child. Grew up with severely high arches and balance problems.
Do you already have a diagnosis? How long did it take you to get it?
Was finally diagnosed with Charcot-Marie-Tooth disease at age 52 by genetic testing.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I wear PHAT braces on both legs and feet.
What has been the most useful thing for you so far?
Taking care to get enough rest and eating healthy, balanced meals.
What have been your biggest difficulties?
I had to quit working. I loved my career as an educator. My balance is very poor. I cannot go places others can.
How has your social and family environment reacted? Have your social or family relationships changed?
My family is understanding.
What things have you stopped doing?
I can no longer go biking, hiking, run, walk long distances, golf, horse back riding...
What do you think about the future?
Life is only as good as you choose for it to be. It's a choice I wake up every day and choose to be happy.
So far, which years have been the best years in your life? What have you done during them?
My best years were from age 42-63. I was healthy and still working. I had a beautiful relationship with my husband. We traveled and golfed.
What would you like to do if you didn’t have your condition?
I would be much more physically active.
If you had to describe your life in a sentence, what would it be?
Life is not for the weak, make each day count. Be kind and patient.
Finally, what advice would you give to a person in a similar situation?
Do NOT stay stuck with any diagnosis. It is just that. How you choose to react to it, is how you will deal with it. Life is beautiful. Be a doer...
