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-   -   My Treatments with PWS. (http://birthmark.org/board/showthread.php?t=533)

Figliulo 02-25-2004 10:08 PM

My Treatments with PWS.
 
My name is Hal Figliulo. I am from Illinois.
I just turned 49 on 2/3. I am covered with PWS. Read about my experience with PWS post for details.
I have tried most treatments.
My first experience was about 13. I had PWS from birth. We were told it would fade. It didn't. I was too young for most treatments until High school.
We tried Dermabrasion. The doctor scraped away several layers of skin then cauterized the area. It was only 10% effective & cause some minimal scaring. The only other treatments at the time were 'reverse tatooing'. Injected skin colored dye. They Doctors said it would look terrible because of the large area. It covers 80% of my face below my eyebrows. The other was radiation. Luckily that was refused due to the large area also. The amount of radiation would have been fatal. I have learned that some of the people that had radiation treatments developed skin cancer. So I guess that was a blessing. I also tried cosmetics to cover the problem. My nose was so red it showed through. It looked like I had make up also. I wasn't sure which was worse. Taking the abuse because of my looks or wearing make up being a male.
That was it until about 1980. I met Dr Weingarten from Evanston Hospital. He told me he was experimenting with a new lazer procedure for PWS. The Argon Lazer. It gave me 2nd degree burns. It worked but was very expensive & would require many treatments. The treatments could only be done several months apart because it took several months to heal.
Some 15+ years ago I contacted Dr. Jerome Garden from the very respected Northwestern using the Pulse Dye Lazer. This also worked. It was wonderful procedure. No anesthetic. Bruising for a couple of weeks. I could be treated many times. It was very expensive at that time & insurance covered very little.
A couple of year later I tried some treatment used to close Vericose Veins. This treatment failed miserably.
A couple of years later the pulse-dye laser became generally available & less expensive, But the HMO I belonged to wouldn't cover it.
I gave up. I have lived with it for all these years. I just ignored all of the terrible treatment given to me by society.

I have been considering going back for treatments. I figure it must have improved & the costs come down.

Lise 02-26-2004 01:24 AM

Re:My Treatments with PWS.
 
Hi Figliulo,

I don't have a PWS but an arteriovenous malformation of the lip. Your story breaks my heart. I find that people with PWS have a great support group at www.birthmarks.com Do you know it? They discuss social implications, treatments, etc. I've read their posts during about two weeks and I found them extremely interesting (like yours). But if you wish to come back here, of course please do so and we can talk again (all vascular birthmarks meet here, it is the founding site).

Lise

eprmo 02-26-2004 01:38 AM

Re:My Treatments with PWS.
 
I just read you moving story. I sense you are a strong man, and a "fighter'. It is unfortunate people don't give you a chance. Have you tried joining"support groups in your area. It would seem, once a woman gets to know you, all the superficial "stuff" would go away.
I understand your frustrations about "first impressions". My daughter was born with a large facial (on her nose) hemangioma, and she was always stared at and also called RUDOLPH.. :(

She had had three laser treamtnets and is scheduled for surgery this summer.

I think she is a more sensitive, and understanding person because of the hardships she had to endure as a young child. She is a teenager now...

Good luck to you,

Elissa


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