Links to other Problems

[MsNaughty]

I have recently started to investigate the causes and problems associated with a PWS. I have a large PWS - grade 4 - in an island pattern down my right arm and hand.

I have read a lot on the interenet about the evolution of PWS (something that the various specialists I have seen have never mentioned) and the fact that it will darken, cobble and bleed. It has already started to darken - but I wondered how likely is it for the other things to happen ? Is it certain that it will evolve in this way ?

I have never recieved any accurate / useful information from the doctors that I have seen - and because I'm in the UK I can't just shop around for the best doctors. What other complications could I have ? Are there any tests I should have carried out ? (when I was born my mum was told I had PWS and that was it  - she was never told of any risks or of anything to look out for etc).

I also suffer from severe eczema on my hands, arms (especially the outside of my elbows) feet, stomach and top of thighs - and I have just been diagnosed as having oral Lichen Planus - and am having a biopsy for this next month.

I have spoken to various people via an e-mail support group who also suffer from skin conditions - and I was wondering if there was any medical link between the two ?

It is also worth pointing out that I have incredibly senstive skin. I bruise and the skin will brake very very easily and takes much much longer to heal then it would on most people. Also, I ALWAYS scar - and the scars are like mini PWS - in the way they look and react then pressed down and to temperature.

Any help or advice you could offer would be very much appreciated.

[Looking]

I used to have really bad acne.  I'm 26 years old.  I have very oily skin so oily that as I write this I can feel the oil running down my forehead.  What can I do to stop it.  It looks shiny all the time and I still have problems with acne on my back and chest.  I don't like to put powder on my face because I think it will only clog my pores and start up my acne problem again.  I have tried using over the counter products but they cause me to beak out.  I hate looking like a greasy person when I take a shower every morning.  What can I do?  Can anything be done?

[mythri]

I had developed lichen planus on my legs and now I am left with scars. Its very ugly to have them. Kindly help

[mythri]

I developed lichen planus last year and am left with bad scars please help.

[StarLite]

I understand your frustration with not getting the right treatment or the right information about PWS. For I have a different condition, that my own doctors and specialist can't figure out what is actually going on. But you should be thankful for this sight there are not many people who are willing to give advice for free, everything is about money now. What we need to remember is these Doctors are giving up there own time to make this sight happen. I wish you Good Luck in your search for more answers.

                        StarLite

[MsNaughty]

I came to this site looking for help, and confirmation of information. However, the answer I have received from your dermatologist shows nothing but his lack of knowledge and understanding about PWS.

There are thousands of people in the US who are currently receiving lazer treatment for the removal of PWS - who have found it extremely effective - and who have been able to receive funding from their insurance companies.

I suspect that this dermatologist is one of those who sees it as nothing but a cosmetic problem.

I suggest that anyone looking for some accurate information on PWS visits http://www.birthmarks.net/

[Alan Rockoff, MD]

Port Wine Stains of some parts of the face can be associated with neurological symptoms, but those elsewhere have few if any internal consequences or associations.  Cobbling of the lesion and associated bleeding can indeed happen, but in my experience rarely does.  If you're an adult and it hasn't, it most likely won't.

There's no association I know of with eczema, lichen planus, or other skin sensitivities.

Laser treatment of these lesions is feasible but very tedious and only partially effective.  In this country, insurance won't pay for it.

Best.

Dr. Rockoff