- Bethlem Myopathy
- Interviews
KT's interview
How did all start?
Tripping while distance trail running
Do you already have a diagnosis? How long did it take you to get it?
Yes, diagnosed officially in April 2020. About 1 year of lots of tests including 6+ MRI'S,multiple blood work and nerve conduction studies, muscle biopsy, full genetic panel and several labs for pathology testing.
For what medical specialties have you been treated? What has been the most useful specialty for your?
See above
What has been the most useful thing for you so far?
Past experience with running, cycling, and general strength training.
What have been your biggest difficulties?
Walking down the street like any normal person
What things have you stopped doing?
Long hikes in the local neighborhood including single track hilly trails.
What do you think about the future?
Have no clue
What would you like to do if you didn’t have your condition?
Probably go more places trips etc. without thinking about how to move once there.
If you had to describe your life in a sentence, what would it be?
Worked 9-5 for 40 years and luckily healthy all during that time.
Finally, what advice would you give to a person in a similar situation?
Stay moving as best as possible, have a hobby and eat a healthy diet.
