- Klippel-Trénaunay-Weber Syndrome
- Interviews
Alison's interview
How did all start?
I was born with both of my conditions
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed a few days after being born
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have had leg surgery and breast surgery, laser treatment on my skin, and receive iloprost infusions for raynauds
What has been the most useful thing for you so far?
All the above
What have been your biggest difficulties?
Very large port wine stain birthmark, bullying, lack of understanding.
How has your social and family environment reacted? Have your social or family relationships changed?
I had a very tough time at school and at work. I could not admit to my medical problems as I would never have gained employment. I spent years covering it all up. My health is too poor to work at all now.
What things have you stopped doing?
Working
What do you think about the future?
I'm lucky I have good friends and family who care for me
So far, which years have been the best years in your life? What have you done during them?
My 40's
What would you like to do if you didn’t have your condition?
Still have a job, be more sporty, go to cold places
If you had to describe your life in a sentence, what would it be?
Up and down
Finally, what advice would you give to a person in a similar situation?
Don't keep your worries and fears inside you, find someone to talk to, get help.
