- Oculopharyngeal muscular dystrophy
- Interviews
Fabel's interview
How did all start?
Started having issues with my eyes - one eye being weaker than the other and blinking slower especially when I was tired.
Do you already have a diagnosis? How long did it take you to get it?
Yes. After my second surgery, that surgeon had a feeling about what was wrong. I was about 55 then.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist follows me but that does nothing. My ENT who helps protect my esophagus from issues like reflux - other problems.
What has been the most useful thing for you so far?
Gathering information. Staying positive. Keeping my life normal.
What have been your biggest difficulties?
A few issues swallowing - but so far, I have done pretty well. My eyes bother me. A bit of leg pain/ weakness.
How has your social and family environment reacted? Have your social or family relationships changed?
My family is very strong and helpful
What things have you stopped doing?
Nothing - except eating my favorite food, prime rib!!
What do you think about the future?
Day by day
So far, which years have been the best years in your life? What have you done during them?
Weird question. Each year has it as positive and negatives.
What would you like to do if you didn’t have your condition?
I probably would not live my life with the same love of each day
If you had to describe your life in a sentence, what would it be?
I am blessed, with great friends, loving family, forgiving God.
Finally, what advice would you give to a person in a similar situation?
It's a shock at the beginning but don't waste a moment
