Vascular Birthmarks Foundation Forum - View Single Post - New to the website adult with PWS
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Old 04-20-2010, 03:32 AM
kaykay kaykay is offline
Senior Member
Join Date: May 2006
Posts: 233

i understand and respect your opinion tianasmama but i do not agree with it.

My father saw my birthmark as a sigh of his infidelity while my mother was pregnant with me, an held my face close to his chest. That was wrong. I was a baby and i would not know who was starting at me.

My mother has always blamed herself for my birthmark. Was it something she did wrong ? she had a miscarriage that may of been due to the chemcials that were sprayed on the cane fields that she had to drive threw every day.

Yes parents will be concerned about the stares their children get. The comments. The teasing. How can they prepare their child for all that ? You can't really, only try.

PWS affect MY health. It affects my mental and phyiscal health. Its grown. its been left untreated for many years. I do not have the best of health. If my mother had been able to pursue treatment maybe my birthmark wouldn't bleed when i pass my hands threw my hair, the pimples would heal faster and not leave scarring scabs on my face. Maybe i could drink soup in public with my confidence. have hearing in both ears. Not have to worry about straining my neck for fear of a high temperature fever and swelling that just takes a couple minutes to happen and leaves me flat on the bed for days unable to do anything. Maybe i could of been able to play body contact sports ! I love boxing. Not have to feel the blood pumping and look down my face an my cheek and lip pulsing on a hot day. I wouldn't to worry about the men i go out with for fear they are gonna pong someone into the ground because of someones stupid comments. Wouldn't have to worry about my face suddenly bleeding in public and wondering do i have enough tissues in my handbag. I wouldn't to answer that question " what is that on your face " or hear two kids says " look the monster coming ". I'd be able to speak better. Wouldn't question myself do i have a learning disablitiy. oh wow the painful ear infections i had growing up !

I could go on.

I think you are wrong to say its awful what parents put their kids threw. I think it is love and concern and parents have every right to do what they can with their children's health.

it took about 7 nurse's to pin down my ass on a hospital bed when i was about 3 for treatment. screw that needle ! I wanted that chocolate easter egg i saw lying around. I'm sure it pained my mother to see that but i know it was for my own good.

ya know what ? I'm not the best of people but some of my expeirences have made me stronger in some ways. I never once had a fight because of my birthmark. Emergency ? you call me for a cool head. I credit my PWS for that. I watch documentaries and see beautiful young women would rather have breast implants than a place to live and i tell myself i thought I had issues !

But not one day goes by that i don't ask myself what am i going to do with my birthmark. Its grown. Its worse. How can i get treatment. I live in the wrong country. I do not have the money. I want treatment. I need it.

Thats just me. Everyone is different. We all have weakness and strenghts. Some people handle things better than others. I am more on the down side. I have a birthmark an it sucks. I'd rather not have it, i just have to live with it and pretend everything is fine for other people not to feel bad.

As for my mother, I know she's frustrated every day. She looks in on me all the time with i am sick checking to see if her 32yrd baby is still breathing.

That, is what parents go threw.

so please, while you are intitled to an opinon, keep the parents feeling in mind. You might end up getting the attention a mother bear protecting her cubs !

My understanding is PWS should be treated as soon as possible. Who can fault a parent for wanting to give their babies the best chance to survive in this world as long as it helps and is no danger to their health. babies are given shots for measles but theirs no gaurentee they will ever be expose to it in the first place.

and thats my five cents damn. to think i don't talk much. But i really felt like i should say something
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