- Blue Rubber Bleb Nevus syndrome
- Interviews
Josh.price92's interview
How did all start?
Continual nose bleeds up to 15 times a day aged 11 onwards
Do you already have a diagnosis? How long did it take you to get it?
Yes. 12 years to get diagnosed. Parents were not concerned by skin lesions and so never took me too a doctor. At 22 I had unrelated surgery and they immediately queried the extremely large one under my arm pit - probably only because I was underweight & it looked like a lymph node. Was referred for ultrasound, who couldn’t determine nature of the mass, just that it was not lymph node, so had it excised and histology diagnosed BRBNS.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Dermatology has been only input. Completely unhelpful. Despite apparently 2 specialists in the department in the disease I’ve never met either or ever had an appointment with anyone that’s heard of it. No information given, no treatment given. Discharged myself after 2 years.
What has been the most useful thing for you so far?
Online group.
What have been your biggest difficulties?
No doctor having ever heard of the disease- no one understanding the implications of it
How has your social and family environment reacted? Have your social or family relationships changed?
No change
What things have you stopped doing?
Nothing
What do you think about the future?
NA
So far, which years have been the best years in your life? What have you done during them?
24-25. 3 marathons, 5 halves, every sport imaginable in between
What would you like to do if you didn’t have your condition?
NA
Finally, what advice would you give to a person in a similar situation?
Keep going
