- Scleromyxedema
- Interviews
Rob's interview
How did all start?
Over a number of years I grew weaker and had reduced general body functions.
Do you already have a diagnosis? How long did it take you to get it?
I have diagnosis, it took about 3-4 months
For what medical specialties have you been treated? What has been the most useful specialty for your?
Only IVIG.
What has been the most useful thing for you so far?
IVIG
What have been your biggest difficulties?
General body function and mobility
How has your social and family environment reacted? Have your social or family relationships changed?
No changes in family except I have greater support family wise
What things have you stopped doing?
I have stopped living a degenerative lifestyle socially ie. I used to drink a great deal.
What do you think about the future?
I have a positive outlook
So far, which years have been the best years in your life? What have you done during them?
The last year as I have found some lifelong problems and am learning how to deal with them
What would you like to do if you didn’t have your condition?
My condition is lessening as we speak and I have enjoyed the fight back to health and have learned a lot
If you had to describe your life in a sentence, what would it be?
Very interesting, maybe even intriguing.
Finally, what advice would you give to a person in a similar situation?
Don't rely on others to find a solution for you because it wont come. Maybe some might have an idea or two but you have to evaluate and act and that is the thing, you have to act.
