- Hereditary Neuropathy With Liability To Pressure Palsies HNPP
- Interviews
Annabelle's interview
How did all start?
Few clumsy issues as a kid. After my second daughter at 22 developed a clumsy foot. It was like it was second behind rest of my body. After 3rd child started to get numb patches around body. Ignored it till 4th child 16 months later when I couldn't ignore areas of my body going numb for weeks at a time. Mri confirmed scarring on my brain. Possibly ms but not typical. Fast forward 9 years and 4 neuros l
After, finally got ncs and shocked Neuro with amount damage done compared to my mobility....
Do you already have a diagnosis? How long did it take you to get it?
9 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Lot of negative experience.
What has been the most useful thing for you so far?
Talking to other hnpp'rs
What have been your biggest difficulties?
Finding docs/neuros with knowledge or willing to research condition
How has your social and family environment reacted? Have your social or family relationships changed?
Have retreated from friends n some family. Because I don't "look disabled" or "act disabled " I've had a lot of negative reactions.
What things have you stopped doing?
Socialising. Dating.
What do you think about the future?
Undetermined yet
So far, which years have been the best years in your life? What have you done during them?
Before diagnosis. Never thought about how life choices affect future mobility
What would you like to do if you didn’t have your condition?
Travel
If you had to describe your life in a sentence, what would it be?
Tired of my body and it's limitations
Finally, what advice would you give to a person in a similar situation?
Talk.
