Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.
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All photos and text are the property of the families represented, and may not be used without their consent.

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My Story
Burnaby B.C. Canada
September 3, 2005

Hello everyone. My name is Freddie, and this is my story.

At age 13 or 14, I noticed a bald spot as big as a quarter on my head. I went to see a doctor and was shown the door with some cream to rub on the bald spot. LOL

Then a year later I went to see a dermatologist who took a biopsy. And to a few more specialists, (as my bald spot grew and grew). They determined it was some form of Scleroderma. By this time, the left side of my head and forehead were melting and deforming.

One day while visiting my sister (whose husband is a well known orthopedic surgeon), I was introduced to Larry’s friend and squash partner, George Swartz (plastic surgeon).

He casually looked at my head and thought he could help me. He said first we will cut some of the bald spot out and just sew your head back together. And the next year, we will put 9 pieces of silicone in your forehead where the facial distortions are.

Not knowing that it was Rombergs, at age 16, was not a great idea, as Parry Romberg was not quite done with me yet. It looked O.K but not for long.

Things seemed fine through my twenties. But the silicone was moving around up there causing me pain, headaches and it looked really bad (most importantly). People would ask me what happened to my head. And I would say I was in a car accident as a child and have silicone in my head. I was embarrassed. Felt like a freak.

At age 35, I had a chance to see Dr. Swartz again to show him his great work! (it’s not his fault I know, but I am bitter). Sorry.

He said wow. And referred me to (remember this name all) Dr. Lassard, (Royal Victoria Hospital, Montreal) Lucky for me, Dr. Swartz being a friend of my family got me on the fast track to see her within a week (not a year, her list time).

I was in the waiting room to meet her. She took one look at me and said you have Rombergs Syndrome. I said what!! She explained it to me and the common misdiagnosis of Scleroderma.

She advised me that the silicone must be removed and we will put in a dermal graph from your leg, fix your eye and your nose (which were also touched by Mr. Romberg.)

Today is August 30/2005 (9 months from my first appointment), and I just got home yesterday from my six day stay at the hospital WITH A NEW FACE!!

The last night in my hospital room, I looked in the mirror and I started to cry and cry and cry. I looked sooo good, so normal. I had this piece of plastic in my head for almost 20 years. And now it’s gone. I am in lots of pain but the worst is over.

It’s going to be months until it’s all settled up there, and we will see how much fat gets absorbed. I hope not much. But the hard part is over. Let the healing begin!! She said follow up lipo injections might be necessary, which is minor.

I hope you get something out of this story, and don't hesitate to e-mail me.Telling my story with you all is liberating, and I felt that it is necessary to share this with you all.

Lots of love,

Feel free to leave a message for Fred at rombergs@hotmail.com

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All photos and text are the property of the families represented, and may not be used without their consent.

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