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jane119 12-29-2005 08:15 PM

Life with a PWS - by Jane
I have a silver dollar sized pws on my right cheek. After reading all of these stories, I realize my pws is not so bad comparatively speaking, but it doesn't mean I haven't had my share of rejections, stares, and questions over the past 54 years. When I was born in 1951 laser treatment was not even an option (the laser wasnít even invented until 1960). My mother says I was injured at birth due to the doctorís use of forceps, a common practice then. This is her theory only, since she was under heavy anesthesia during the birth, also a common practice then. She says that when she saw me for the first time she thought I was the ugliest baby she had ever seen. :'( Howís that for a nice beginning? She further says that at birth, my face was marked like a hot horseshoe had been laid on it, but that all of the marks (except for the one that remains today) faded before we left the hospital.

I didnít really have a problem accepting my birthmark until I reached junior high. Like most teens, I was self conscience about anything and everything that made me even the slightest bit different. My mother bought some cover up makeup that was green, over which I used beige foundation. Within the color spectrum, red and green are opposites, so the theory was that green makeup would neutralize the red [pws]. It did cover up the pws reasonably, but wearing heavy makeup on just one side of a heavily freckled face looked rather odd. So, I applied makeup to my entire face. Result? I still looked odd. Whatever I did or didnít do, I was going to look different, so I didnít use cover up makeup for very long. Iím glad I discovered that early on. I decided then that I wasnít bothered by my pws and if it bothers someone else, itís their problem. 8)

Most people I encounter are too polite to say anything about my pws. The ones who usually speak out are children. Iíll be somewhere in public and a child will say something like ďhey lady, how did you hurt your face?Ē To which I usually reply ďitís not hurt honey. Itís only a birthmark.Ē I then leave it up to the parent to teach the child about birthmarks and about speaking to strangers. Sometimes however depending on my mood or how rude the child is, I might say something like ďIs it still bleeding?Ē and go on from there. Adults who do speak up usually ask me if Iíve ever looked into having it removed, which is so extremely rude that itís hard for me to reply civilly. :-X Usually, I just say a terse ďnoĒ and leave it at that. Sometimes however I continue with something like ďhave you ever considered having a face lift?Ē Recently a dentist who performed some emergency work on a Saturday told me that he could remove that birthmark for me; that he was certified with a laser. I was aghast! I told him that if I had wanted it removed I would have done it a long time ago and via a dermatologist, not a dentist.

My pws is such a part of me that I canít imagine going through any kind of pain or expense getting rid of it, unless it were necessary due to an associated medical condition. Besides, from what Iíve read on this web site, removal of a pws is temporary anyway. After all of these years, I donít ďseeĒ my birthmark anymore. When I look in the mirror the pws is just part of my face. Sometimes, Iím truly surprised when I run into an old acquaintance who immediately recognizes me while I canít remember them for beans. Then I think, oh yeahÖ.itís my birthmark they must remember. Good reason for not becoming a bank robber, ha ha. ;D

hankbartenbach 12-30-2005 12:18 AM

Re: Life with a PWS - by Jane
Hi Jane,

Thank you so much for posting your story to the group. I got a kick out of some of the comments. Elementery school was probably the hardest for me but it got better over the years.
I know exactly what you mean when you run into someone that remembers you but you do not know them.

I hope to hear more about yourself in the PWS section. I think you could really help some people on this group that are young adults such as myself because you have lived with your PWS as long as you have.

Thanks again for posting.


incognito75 03-18-2006 04:34 PM

Re: Life with a PWS - by Jane

I loved your story! I am 31, female, and have a rather large PWS on my chin and neck/cheek. Not only is it large, it's also dark purple/red. It gets worse. I teach children in 4-7th grade. I get all the comments, questions, and remarks just like you. And just like you, I can get moody about it. I am not always polite about answering questions either, espcially if I think it's rude. I don't like idiot/rude children and I hope their parents teach them better.

I've learned to appreciate it. Mine is actually beginning to slowly raise off my skin so I'm worried it might become cancerous.

swsc 03-18-2006 10:28 PM

Re: Life with a PWS - by Jane
Hi incognito75. It's wonderful to see more adults with pws posting and sharing their experiences.

I noticed in another post you asked about scholarships or financial aid. If this is concerning actual laser treatment, I don't know of any groups that pay for treatment, only transportation or lodging. You might check with Dr. Hochman's foundation, The Hemangioma Treatment Foundation.

You also mentioned the fear of the pws turning cancerous, and that you had read this somewhere. Do you remember where you read this? Any information you could provide would be most appreciated. I'm not an expert, but as far as I know, this isn't a typical concern with pws.

My grandson has pws/SWS, and will be 12 years old in May.


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