Fatty Arm - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo
1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Thread Tools Display Modes
Old 01-25-2013, 09:57 AM
Lucille Lucille is offline
Junior Member
Join Date: Jan 2013
Posts: 2
Default Fatty Arm

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
Reply With Quote
Old 02-06-2013, 12:01 PM
dancermom dancermom is offline
Join Date: Jun 2012
Posts: 44
Default 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.
Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump