Vascular Birthmarks Foundation Forum - View Single Post - My HUGE birthmark; HELP.
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Old 06-05-2007, 09:49 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
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Hi Sophia,

First of all welcome to the group.

As you have proabably seen some of my posts I am Hank. 25 year old with facial PWS/SWS.

I do have some good news. You do not have the largest PWS. There are three people right off the top of my head that I know that have 60, 75, and over 90% of their body covered head to toe with a PWS. The one that is over 90% is a toddler, but the other two are both adults. I could get you there email address if you would like. Just email me and I can forward you their email address. Also, you can check out my website www.hankspws.com I have links to individuals websites on there as well.


All three of those people have SWS (Sturge Weber Syndrome) You might want to consider looking into the condition. If you have it or KT Syndrome which effects a persons limbs where PWS is. KT is also related to SWS.
There is a lot of information out there with KT and SWS. There is some on this website as well.

Now about the comments. Being that I have my PWS on my face you can imagine the comments I get. Now picture this I work in retail. You would not believe the comments I get.
The best thing I can say is teach yourself to become more self confident. If people can tell that your birthmark bothers you then they will point out your flaws. I ust let the comments go in one ear and out the other, that and I have a hearing problem plus selective hearing. You have to train yourself to not let people bother you. If you want to wear shorts, then wear shorts and show yourself off. Ignore the rude people that are not educated enough to know what a birthmark is. I always have turned to eduaction for children because they do not know better but adults are just rude some timres. It takes time to get where I am. I have been trying to get my fiancee (who is the same age as you) to not get as upset when people make comments about my birthmark or her blindness.


Well I hope this has helped a little and if you ever would like to talk you can email me or message me here.

Talk to you soon.

Hank
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