- Carney Complex
- Interviews
Jo's interview
How did all start?
Thyroid issues
Do you already have a diagnosis? How long did it take you to get it?
Symptoms began in 1973, diagnoses about 1991, cause of death in 2017
What have been your biggest difficulties?
The speed and number of recurring tumours, incompetent doctors who refused to diagnose stroke, remove heart myxomas, government agency refusing to allow disability benefits because she should just get tumours removed to go back to work, no matter how many doctors said tumours were inoperable and she was barely able to stand let alone work.
How has your social and family environment reacted? Have your social or family relationships changed?
Family just seemed to take it for granted that everything would continue to get better because it always has, Mum always just went to hospital, got better and came home, it was a terrible shock to find that would not continue.
What things have you stopped doing?
Working, going out, need help to shower etc, change types of clothing etc
So far, which years have been the best years in your life? What have you done during them?
When the tumours weren’t appearing
What would you like to do if you didn’t have your condition?
Live a normal life
If you had to describe your life in a sentence, what would it be?
Unique
