Living with PWS!!!!

Hi,

My name is Shannon I am 37 years old and I have PWS on my whole right arm and hand and on my upper chest... this has stopped me from living... I can stand my PWS Birthmark.. I never wear short sleeve tops or low cut tops because people think I have a hicky there and people are afraid of it etc.... I have had the Dye Laser treatment several times but the PWS seems to keep coming back.... its like it never wants to leave me... I dont know what to do anymore ... I was wondering if anyone has ever heard of anyone getting there Birthmark tattoed with the skin color??????

[hankbartenbach]

Hi Shannon,

Since you asked the same question in your email to me I will just answer you here so others can read it as well.

I personally know of only one or two people that have attempted to get a tattoe on their birthmark and it was to try to cover up the PWS. The lighter your birthmark it is I guess would be the better the chance to have it covered, but the down fall of that is in less then ten years the PWS will start to bleed thru. This is according of specilists in Dermatology that I have seen in the past. I guess I have never recommended people to have this done because I have seen it as a waste of time and money because I know insurance will not cover it. Plus it could possibably cause problems with the PWS.

For you, discribing the reaction your PWS gets from the Pulse dye laser treatments it sounds like you have a darker PWS. If you had the tattoe done it would probably bleed thru in less then five years depending on how deep and thick it is. I have a very dark purple that is thick and deep.
Has your PWS thickened over the years? Or have any raised areas, or bumps on the PWS? If so the raised areas is hypertrophia and the bumps are blebs that can turn into coblestone. A lot of doctors think hormons are linked to this but studies are still being done. Laser treatment will keep the blebs away.

For the laser treatment now. Do you happen to know what tip they are using during treatment. As of right now laser treatment is the only way to treat PWS until technology gets better. If you have not already asked your current doctor about maybe be a little more aggressive during laser treatment. If he/she is unwilling to you can always look for another opinion. If it comes to that you might be able to find some doctors in your area under the resource section at the top of the page.

Also, you can email the "Ask the Expert" doctor on PWS. Dr. Nelson is very well informed about PWS and is working with new ways of treatment. He could tell his opinion about the tattoeing as well.

When it comes to the comments, staring, and pointing. Being that I have a facial PWS and a guy I am not able to cover up my PWS as well as women are. I do have makeup but have not used it in years. I have always said that I do not care what people think of the way I look. If they can not see past my birthmark and can only think negatively about it then that is their problem and I do not need that in my life. I also learned at a very early age to let the comments go in one ear and out the other or let them roll off my shoulders.

Well I hope this has helped some and I will talk to you soon.
If there is any other question you might have just ask.

Hank

Thank you sooo much for all the information... I am going to email ask the expert right now...... and I will talk to the guy that did the laser treatments on me its been a few years.....

thanks again

This is interesting,,,,,two extreme points of view. One person says the pws as ruined their life,,,the other person claims that it doesn't bother him.

First off, the pws has not ruined your life. At least is hasn't ruined mine, I'm 30 with a large pws on the entire right side of my face,,,just finished my 16th surgery. Secondly, to Hank,,,your pws does bother you and so do the comments,,,otherwise you wouldn't be here constantly talking about your pws.

I think you both need to adopt a healthy perspective,,,

Toodles,,,

TATE

I dont think I'd ever get it tatooed, I'm against tattoos as it is. I ask people why they put decorations on perfectly good skin, and hey, why go artificial with tatoos when your born naturally with one.

PWS hasnt ruined my life, but it makes it life hard because of narrow minded people. Just gotta surround yourself with the right people and then that way when you are among the "not so nice" kind of people, you'll be too busy having a good time with your true friends to notice any looks or stares. I find when I'm alone its the most difficult, you can feel eyes on you or read expressions, but if I'm around people who dont care I don't give it a single thought.