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.