Firstly I would just like to say how thankful I am to have found this website.
I was born with all my veins and arteries in my left arm joined together, this makes my arm noticeably larger than the right and from the shoulder to the finger tips I am covered in red marks.
The skin on the left hand is very tight and on occasion I have bleeding from the red marks. When I bleed this shoots out like a power shower. Iím really embarrassed about my condition, I never wear short sleeves and Iím very protective of my left arm and try not to strain it as it often aches.
I just wanted to know if anyone else had the same condition and was there anything that has or can be done to prevent from the bleeding. Iím from the UK and was with Great Almond Street Hospital as a baby but since turning 18 Iíve been forgotten about it.
My doctors donít have the knowledge on my condition and I get passed from pillar to post, I think because it interests them. Iím 30 years of age and getting more pain in my fingers. I just wonder if anyone can help me on this so I can talk to my doctor and maybe get something to help with the pain. There is no cure for this, I know I have it for life but the bleeding is embarrassing and wondered if maybe a skin graft or something would help?
Thank you for talking the time to read my post x
UK group on AVM survivors
Hi, there is a UK group on http://www.avmsurvivors.org/ that you may wish to join. There are other members who have arm avms on that group; perhaps you can get some doctor recommendations. There are over 75 members with arm avms on the website from all over the world.
Your condition sounds like Parkes - Weber Syndrome, which is caused by a mutation in the RASA1 gene (http://ghr.nlm.nih.gov/condition/parkes-weber-syndrome). PWS may be a spontaneous mutation, but can be inherited.
|All times are GMT. The time now is 01:12 PM.|
Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.