Vascular Birthmarks Foundation Forum - View Single Post - My peruvian PWS
Thread: My peruvian PWS
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Old 10-11-2006, 10:45 PM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi Raul,

First of all welcome to the group.

Sorry I have not responded to your story yet, I do not have internet access and am on my girlfriends internet.

Anyways, I am sure you have seen some of my posts so you probably know somethings about me. If not, I am 24 years old with facial PWS with Sturge Weber Syndrome. If you would like to read my story you can do so by visiting my website at

Being that I have been doing laser treatment since I was five years old I have used four different lasers. All of which I still recommend the V-Beam PDL, because it is the safest and most effective I have used.

My question to you is does your doctor have a 10mm tip for his PDL? If you do not know I would suggest asking. Doctors use this tip for aggresive laser treatment. They make higher mm tips but I have not used them. You can see pictures on my website from before and after laser treatments and plastic surgeries.

I have one other question. Do you have any PWS on your gums? Being that you have facial PWS a lot of people including myself have PWS on the gums, pallet and so forth. Also, if you do not have PWS have you done any research when you were in dental school about people with PWS on the gums or that have problems with teeth growing properly because of their PWS.
The reason I ask is because I know several people adults and children that have a lot of dental issues because of their PWS. My teeth on the top gum were all shifted over two places to the left and had braces and some oral surgery (wisdom teeth remove) and now have porcelen glass teeth caped onto my teeth.

Anyways, I was wanting to know if I could use you as a resource for people that I come into contact with that have dental issues protaining to PWS in the mouth.
Linda Shannon the founder of this foundation might also be interested in your knowledge of this topic.

If you could let me know either way you can just message back here or email me directly.

Thank you, and thank you for posting your story. It brought back memories.

Hope to be talking to you soon.

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