- Scleromyxedema
- Interviews
Terry's interview
How did all start?
2015 walking difficulties, unable to grab a lot of things or twist off a bottle (this came and went). Thought it was arthritis, until the red marks appeared on my ankles like symmetrical warnings.
Do you already have a diagnosis? How long did it take you to get it?
It took 6 pathologists a month to independently look at the ankle/leg biopsies and come up with the same conclusion of scleromyxedema, although none of them had ever seen such biopsies/slides.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nothing yet--going to Brown University next week to see what sort of treatment options I have. Also need to rule out leukemia and lymphoma, so surely a bone marrow biopsy is in store.
What has been the most useful thing for you so far?
Nothing yet!
What have been your biggest difficulties?
Used to walk miles a day, and now I can't so I am gaining weight which does not add comfort to painful feet/knees/hips.
How has your social and family environment reacted? Have your social or family relationships changed?
Nothing's changed yet.
What things have you stopped doing?
I've not stopped anything yet.
What do you think about the future?
If I'm further along in this condition and haven't much time left, there really isn't much of a future to plan for, right?
So far, which years have been the best years in your life? What have you done during them?
Had a good life so far!
What would you like to do if you didn’t have your condition?
Buy that dang farm I want.
If you had to describe your life in a sentence, what would it be?
No regrets.
Finally, what advice would you give to a person in a similar situation?
I'm new to this diagnosis so I haven't got worthy advice to give just yet.
