- Charcot-Marie-Tooth Disease
- Interviews
Daniel's interview
How did all start?
As a toddler my teacher noticed I was falling over a lot at school. I was taken to a consultant at the RNOH, where I have since undergone a dozen operations, but was mis-diagnosed aged 4/5. My parents were told "There is nothing wrong with this child. He is just lazy and slovenly". I was given a strict regime of exercises to do, including walking up and down stairs ad infinitum. As you an imagine, it didn't help.
Do you already have a diagnosis? How long did it take you to get it?
As a child I would become severely distressed at the electric shock treatment I underwent to try to diagnose my condition. These were repeated many years later when I was in my 30s and were just as unpleasant.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Specialty is an American term and not one I recognise. I don't know what you mean by it.
If you mean what treatment have I undergone for CMT, these include sub-Talar fusions in my feet, repeat fusions and triple arthrodeses, a spinal fusion, I have worn calipers, a body brace, been in plastic for over a year of my life etc. I could go on..
What has been the most useful thing for you so far?
I guess the feet surgery, as I have been able to retain a relatively normal shaped foot and am still walking.
What have been your biggest difficulties?
Missing school due to surgery and falling behind on my studies, not being able to lead a 'normal' life like my peers etc.
How has your social and family environment reacted? Have your social or family relationships changed?
I have more empathy for my father, who also has CMT. I am sure I'd feel animosity towards him if he'd had me knowing he could pass on the condition, but he was not diagnosed until after me! My father wanted us to emigrate to the USA, but this was stopped when it was realised that I would likely need surgery and the financial situation of the private medical care in the US, compared to the amazing NHS in the UK. Hence, we never moved.
What things have you stopped doing?
Using stairs, driving a manual car, walking unaided, writing by hand, eating without special cutlery, wearing normal footwear etc.
What do you think about the future?
It is a downhill slope; I just thought I'd get to my 60s before the problems started surmounting. Unfortunately, I am only 45 and am starting to struggle.
So far, which years have been the best years in your life? What have you done during them?
0-13, before my surgery. The surgery helped stem he decline, but also brought limitations and problems of their own.
What would you like to do if you didn’t have your condition?
Worked in an industry whereby I could commute to work by tube. However this is not possible.
If you had to describe your life in a sentence, what would it be?
My life is awkward, frustrating and restrictive, yet could always be worse!
Finally, what advice would you give to a person in a similar situation?
Don't allow CMT to frustrate you, laugh off the symptoms and don't inflict it on others by having children without being fully screened.
