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  #1  
Old 02-25-2004, 09:46 PM
Figliulo
 
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Default My experience with PWS

My name is Hal Figliulo. I have had more than enough experience with PWS. I am 49. My PWS covers most of my body in one form or another. I have it over 80% of my face. My forehead is normal. From the eye brows down 80% of my face & neck are deep red. The entire left side of my face is covered. My left ear is deep red & bloated with blood. My nose is a very deep red. Yes I was called things like Rudolph (after the reindeer). It even goes inside my nose. You would hate to see my nose bleed. Luckily it doesn't happen often. My right side of my face is 50 % red then becomes very blotchy with bright red spots. My right ear is the color of my normal forehead. It then extends down my neck & chest. Even my arms. The upperarms are bright & blotchy. My forearms are very light pink. My legs are very light pink & blotchy. I was called strawberry face, Applehead and even a few names that can't be said in polite public forums like this. I was routinely pounded, ridiculed, chided & called names during K-8. Often called by others as the kid with the red face. I had very few friends. During high school it continued. I skipped an entire year of PE because one of the boys during my time period wanted to beat me bloody. The school did nothing despite my parents requests. I have been refused jobs because of the way I look. I have been laughed at & threatened at times. I have been asked to leave places of business. I guess afraid it was contagious. I had a few friends. I had no girl friend or love life. Girls would have nothing to do with me if they thought my intentions were for love. It wasn't all bad. I had good times with those people that would be my friend. My family was wonderful
Thank God for my parents who helped me make it through these times. I could have easily become a Columbine Kid.
Instead I have a job in the IT world. I built my first PC computer in 1977. I remained in the computer industry & respected for my intelligence.
I still get stared at. I go anywhere I want. One doctor even say I had a lot of determination to go out in public. I am sure he meant it in a nice way. I still get questioned. Not enough. I would rather they ask questions so I can inform them about it. Some people laugh & point. I just ignore them. Not worth the trouble. People who get to know me find out I am made the same way. A normal person with a discoloration.
My only regret now would be I have no love life or family. I wish I could. I only have a sister left & a few very distant cousins. Maybe someday I will find someone who will accept me
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Old 09-30-2004, 08:49 PM
hopefultoo
 
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Default Re:My experience with PWS

the people that made fun of you are idiots people are so rude and inconsiderate you have met a new friend now and dont worry about what people think of you they should be looking at your inside and not your outside image you ever heard you should never judge a book by its cover you know.have a good day and i hope you meet someone someday.
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Old 10-04-2004, 01:18 PM
Scrat
 
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Default Re:My experience with PWS

You know, there is a bright side to all of this. I also have a PWS on my face... It cover about 40% of it. It's on my cheek, ear, neck and it goes deep into my hair.
I was never hiding and I didn't shy away from people. I figured that this is who I am and they either accept it or leave. Right now I'm 21 years old, happilly married for 2.5 years and have friends all over the place. PWS does not have to put a dent on your social life... You just have to let your personality shine through. I hope everything goes well for you. If you want you can always write me an e-mail kasia@vcomm.ca
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Old 10-04-2004, 08:06 PM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:My experience with PWS


Hal!

HI! It's great to have you here!!!

May I copy your email and send to a friend of mine ??

How inspiring!

Lisa
Addie's mom
em me direct if you like: Msearp9@jam.rr.com
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