- Klippel-Trénaunay-Weber Syndrome
- Interviews
Bridewell's interview
How did all start?
Born with port-wine stain R leg, toes to hip. Symptoms worsened with puberty, and gradually with age.
Do you already have a diagnosis? How long did it take you to get it?
Diagnosis while in primary school, about 12 years old.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Vascular and collarectal surgeons.
What has been the most useful thing for you so far?
Surgical compression stockings - without which I wouldn’t have been able to lead the relatively normal life I’ve had.
What have been your biggest difficulties?
Physical exertion and stamina, hemorrhoids, self-confidence and acceptace.
How has your social and family environment reacted? Have your social or family relationships changed?
Supportive family and friends
What things have you stopped doing?
Group sports, ballet (as a girl), wearing shorts and short skirts.
What do you think about the future?
I’m nervous about the physical limitations my condition will present as I age.
So far, which years have been the best years in your life? What have you done during them?
Pre-teens, before became self-conscious and acutely aware of my difference.
What would you like to do if you didn’t have your condition?
Everything!
If you had to describe your life in a sentence, what would it be?
Fortunate, but measured.
Finally, what advice would you give to a person in a similar situation?
Take each day at a time, and give thanks for every blessing.
