- Paramyotonia congenita
- Interviews
Meredith's interview
How did all start?
I was born
Do you already have a diagnosis? How long did it take you to get it?
Yes. 50 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
No treatment available for me
What has been the most useful thing for you so far?
Warmth
What have been your biggest difficulties?
Keeping up with the crowd
How has your social and family environment reacted? Have your social or family relationships changed?
Men can be cruel; my first husband was a real shit about it. I keep it a secret from supervisors and many other people. I've worked at Yale for 7 years and only recently told a few people because they were curious why I got to park in the highly coveted lot right next door (parking at Yale is nuts).
What things have you stopped doing?
N/A. There are so many things I've just never been able to do... like run and run (I can't even make it to first base). But now that I think about it, I used to play racquetball and bicycle more.
What do you think about the future?
Hoping that I'll lose weight and get back to being able to do more than I am able to now. PMC is that much harder when you have more weight to literally carry around... I'd love to get back to bicycling.
So far, which years have been the best years in your life? What have you done during them?
My 20s were, but perhaps my late 50s will be also!
What would you like to do if you didn’t have your condition?
OMG, so many things! I'd RUN, bicycle long distances, kayak, work out, play a sport! Maybe even go skiiing!
Finally, what advice would you give to a person in a similar situation?
Try not to let it get you down; focus on the positives. Do NOT stay with unsympathetic people; they will only make you more miserable. Whatever you do, do NOT gain too much weight!
