Vascular Birthmarks Foundation Forum - View Single Post - hello all
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Old 05-26-2006, 01:24 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi Kaykay,

I would have to say that was a very interesting story.

Here is a couple things that stuck out in my mind while reading that might be bennift you. I have found that I perferr talking to children for one because they are more intreaged but are not as judgemental as adults. Children do not understand our condition so I think of it as educating them. When parents do the hush hush thing that because it imbaress them bothers me because the child is just curious and I go up and talk to all of them. I figure if that child does not judge one person in his/her future or even makes a friend or a relationship with someone with any kind of disablity because I educated them about my birthmark that it was worth it. Remember I talked to hundreds in my life. Just one and it is worth it.

From what you discribed from your birthmark I am convinced that you most likely have PWS (port wine stain) and quite possibely might have Sturge Weber Syndrome (SWS). I have both. If you had SWS it would explain the headachs, and the extensiveness of your birthmark. You might even have KT syndrome with is linked to SWS in your neck and shoulder, but I do not know KT very well, I do not have it so leave that up to a doctors to say. Also, I would highly, strongly recommmend going to an eye doctor and get tested for glaucoma. The reason is Glaucoma is a big factor with SWS. If you have PWS or your birthmark any were near your eyes you are at a very high risk of having it. If not treated it can lead to blindness. I do not have glaucoma but a different eye condition linked to my PWS and I am going blind and am currently in a blind school for rehab. I strongly recommend you getting this checked insurance or not. Glaucoma sneaks up on you and you will not realize it until it is to late. The pain in your eye could be a factor of glaucoma.

Also, I would suggest trying to get insurance now before trying any surgery because most insurance companies do not like to cover pre existing conditions but if your birht mark is growing (like mine as and several others with PWS and SWS have) it is very expensive and you have to prove to the insurance company why you need surgery.

I have had laser treatment for the past 18 years, and now have had three plastic surgeries that I had done last year. If you would like to see pictures you can see them on my website

Also, you might consider asking a couple of the experts on the front of this website a few questions. Ask the Glaucoma, KT, and PWS Experts for info on the condition and send them pictures. They would be able to tell you more about them then I would. I can only tell you personal experenses.

If you have any questions at all please email me or ask here on the group. We are here for you.

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