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tweety 01-06-2005 01:11 AM

[ ;D Hi I'm 16 from canada, I have bin having treetment for abot 12 years now. and boy has it had an afect on my life. people have notist the change treetment brings. just to tell anyone who is getting it for the first time it is a little scary at first but boy is it wwerth it. so if you need any advice just e-mail me at ;D

eprmo 01-06-2005 10:55 PM

Re: treetment
I am glad you feel so encouraged...Where was your H ,and what has been done. I have a 15 year old daughter, who is curently having treatments too.


hankbartenbach 01-07-2005 02:08 AM

Re: treetment
Hi tweety,

I am glad you are here. Did you have a hemangeoma, or a Port Wine Stain?

I am 22 years old with PWS. I have done laser treatment for about 14 years off and on. Laser treatment worked in some areas of my PWS, but others are to deep and are not phased by laser treatment. That is why I am seeing Dr. Waner in NY to have get it completely removed woth surgery and am also going to continue lasers treatment.
I know what you mean, about the laser treatment affecting your life. Everybody can tell even people you do not even know.

Once again glad you are here.


tweety 01-08-2005 09:20 PM

Re: treetment
to Elissa
;D i am cerently at Centenary Hospital, toronto, Ontario i go every 3 months its diffucalt to stay in school but pople ecept me fo how i am. ;D

to Hank
;D i have pws ;D

tweety 01-08-2005 09:32 PM

Re: treetment
;D sorry every one but i have truble remembering so im not 16 im 17ok ;D

hankbartenbach 01-08-2005 11:40 PM

Re: treetment
it happens to all of use from time to time tweety, do not feel bad.

Is your PWS on your face or in a different area?

We would love to here your story. I can not wait to hear it.


tweety 01-12-2005 11:38 PM

Re: treetment
;D yes it is on my face and 90% of my body ;D

hankbartenbach 01-13-2005 12:46 AM

Re: treetment
90% of your body, wow.
I have to friends that have PWS from head to toe, on is 60%, and the other is 75%. Both of them have Sturge-Weber Syndrome. Do you have glacouma, or seizures?
If so, you might want to look into SWS.
I have SWS on the brain.

If you want more info on SWS let me know and I can get some for you.


tweety 01-16-2005 12:33 AM

Re: treetment
;D yes i have every one of the simptoms of sws but not the brain involvment
and im luky because i have not had a seizure in 1 1/2 years almost nothanks on the info i have lots i was at a convenchon in detroit last summer

suvaratking 08-23-2013 12:13 PM

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