port wine and k-t syndrome

[ombry]

i'm 33 years old, i'm form italy and i was born with port wine for the 80% of my body specially on the right part.
I know that is impossible to remove it from over the skin, but i would like to be better in my face, i've port wine on the right and a mouth like in sturge-weber syndrome.
The most important think is that during my adolescence i have had big problem on my right leg with ulcers and the risk of loosing my foot.
Anyone didn't explain to me the reason for this problem, only 4 years ago i found a doctor who soke about k-t syndrome.
I think that i have both of port wine and k-t, and the problem remain, noone here is in the position to help me and i'm leaving in this way, but i would like to change my life style, i have till now ulcers on the right leg (completely red for the port wine), but now i don't know where to go!
If someone can give me an help, please reply to me.

[hankbartenbach]

Hi Ombry,

First of all welcome to the group.

I am a 24 year old with facial PWS with SWS.


Being that their is not a doctor in the resource section of this group, I would recommend going to the Europe chapter of this website www.vbfeurope.org they might have or be able to direct you to a doctor in your area or some where that is driving distance.

So do you have SWS with your KT and PWS? If you have not been dignosed with it, once you find a doctor I would have them give you an MRI with and without contrast. That is the only way that I know of to correctly diagnose your condition, and find out if it could be internal.

Also, if you want to talk to others with PWS like us and is another branch of this group, go to www.birthmarks.com
There are some people that have full body PWS that are on that group.

I really hope this helps.

Hank

[Lisa_99]

HI Ombry

I have a 17 daughter w/ KT syndrome. Email me off list and I will try to answer questions for you.

Lisa
email: lisa.williams99@gmail.com