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.


The following is my story as it appeared in an article entitled "For Appearance's Sake" in the October 1995 issue of HUPdate, the newsletter for the Hospital of the University of Pennsylvania.

In Advanced French Conversation, my students and I discuss "l'appearence physique." We tackle such provocative questions as, "Would you rather marry a beautiful woman or an intelligent woman?" and "Do you believe that character is shaped by physical appearance?"

When we first come upon "chiurgien esthethique" (the French use "aesthetic" rather than "plastic" as the name of the specialty), I sense my students' discomfort. At first, they refuse to meet my gaze as I insist that they repeat after me the new vocabulary: "scar", "disfigured", "reconstruction." I then tell them my story, and every time, their uneasiness gives way to rapt interest as I use my medical history to open a discussion about the importance of physical beauty in our culture.

I suffer from Romberg's syndrome, otherwise known as facial hemiatrophy, characterized by the wasting away of skin, subcutaneous tissue, muscles, and occasionally cartilage and bone of one half of the face. The disease, along with years of plastic surgery in attempts to treat it, has left me with an unusual face.

Since only 1,035 cases of facial hemiatrophy were documented from the middle of the 19th century to 1966, the medical community hasn't had much incentive or opportunity to explore causes, still unknown, or methods of treatment, still largely unsuccessful.

I tell them that at age 16 I would have submitted to any treatment, no matter how painful or dangerous, in hopes that it would make me pretty. As adolescents, they have no difficulty understanding.

The treatment that I did undergo consisted of weekly silicone injections starting in 1971, when I was sixteen. My parents signed the papers releasing Franklin Ashley, MD, chairman of plastic surgery at UCLA, and Dow Corning from any responsibility for side effects.

Dr. Ashley explained that the treatment was strictly experimental, that he was one of only 10 physicians in the country licensed by the FDA to use liquid silicone injections, and that I was to be something of a "guinea pig." He assured us, however, that in ten years of injecting liquid silicone facially, the results had been very successful and that he knew of no side effects.

Of course, my parents were credulous. They had a trusting respect for people in positions of authority. They were young parents with only high school educations. They had another daughter with a cleft palate. They needed to trust the wisdom of the consummately well-qualified and world-renowned surgeon who counseled us from behind his impressive oak desk.

For three years, my mother picked me up once a week from Orange High School and drove me sixty miles to Beverly Hills. I would sit sometimes for hours with 10 to 30 women, most worried about wrinkles or slight imperfections, some there for breast implants. Only rarely did an accident victim appear.

After I reached a small visiting room, Dr. Ashley would arrive briskly, pick up a syringe, palpate my face to choose the week's target, and then insert a five-inch needle under my skin, "fanning" the needle back and forth until two to four milliliters of fluid had been injected. After this two-minute appearance, he was gone.

The silicone theoretically was to remain suspended in tiny droplets between the fibers of my fragile face tissue to fill out the areas that had wasted away. I submitted happily to the touch of Dr. Ashley's strong, well-scrubbed, paternal hands. We accepted it all: the hours of driving, the hours of waiting, the factory-like atmosphere, the pain. We accepted it gratefully.

So, I ask my students, would you have done the same thing? Why does it now seem patently silly to think that women's bodies and lives would benefit from the installation therein of plastics? Has "natural" finally been accepted in mainstream consciousness as a better way to live our lives? Have we reached a new level of understanding about health or will vanity always win in the end?

We discuss an article from a French magazine about psychological problems related to appearance. One student remembers reading that in the corporate world women are increasingly judged on the basis of their physical appearance - the relative fitness of their bodies being read as an indication of their level of self-discipline and as a predictor of success.

Someone asks, might there be a connection with pollution? Don't both have to do with our inability to envision consequences, with our misunderstanding of our place in nature?

We talk about first impressions. I try to efface any trace of bitterness from my voice while telling them a story about a Rotary Club fellowship I lost to a beautiful female candidate. The fellowship, for a year's graduate study in France, would have involved much public speaking and socializing. Though both my French and my voice were far more "beautiful" than hers, Karine was in fact better qualified in the eyes of the ten men interviewing us.

We talk about how people select life-mates and about why the rich are also the beautiful. I tell them that I have decided not to have children in part because my condition may be genetically linked.

And then they sometimes put the hard question to me: Does this mean that I would rather not have been born? "That would have been such a shame!" they kindly add. I have to pause, teary-eyed and troubled. They rescue me with questions that indulge me further: Do I still carry the silicone in my face and is it safe?

It was "by chance" that I came to Philadelphia in 1981 and ended up in consultation with Dr. Linton Whitaker, internationally renowned for his work in craniofacial reconstruction at the Hospital of the University of Pennsylvania.

At our first visit, he could not understand why the massive quantities of silicone had held up so well. Other former patients of Dr. Ashley's he had seen had fared worse. One young woman had had silicone injections to correct a minor asymmetry of her chin. After several years, the fluid shifted, leaving the left side of her chin distended like putty. Over time, he said, the silicone in my face would undergo a similar downward migration, potentially spreading to my bloodstream and the rest of my body, with uncertain consequences.

Dr. Whitaker had already treated three young women with Romberg's syndrome, using grafts from their own bodies, with mixed success. He had already removed silicone from half a dozen other patients. He said he would combine his experiences, removing the silicone, then reconstructing my face in a series of three or four surgeries. At this point, in his estimation, my treatment was not cosmetic luxury but medical necessity.

In this way, the old "wound" was reopened. I am candid with my students, but there are certain things I have never shared with them. They have never heard about the first time I discovered that my appearance might be a cause for embarassment. A friend pointed out a spot on my face. Her mother said, "There's nothing the matter with her face; she's very pretty." But my fears were not calmed. My parents then told me, in terms a seven-year old could understand, that I had the beginnings of a major facial deformity.

I was lucky, because my own cosmetic handicap was not full-blown until I had reached my teens. My self-image was largely shaped by then and was generally very positive. At age 26, when I saw Dr. Whitaker, I had supposed that the days of doctor visits, of photo documentation, of raiding medical libraries for information, were behind me. But once again, I was confronted with the medical release forms, exonerating the hospital from any responsibility in paralysis, loss of use of my tongue, damage to my optic nerve, or further disfigurement.

This time, the medical risks were real, not theoretical. In signing, I took full responsibility for my decision to elect an experimental and risky surgery. But this time, my signature was not a code message for "Save me!" Approaching 30, I did not dismiss the possibility that perhaps I had even chosen (!) this body/this face, as american writer Edgar Cayce believed we do, to learn essential lessons in this lifetime. I wanted only to undo what I had foolishly and eagerly sought a decade earlier. The removal of the congealed and dangerously unstable silicone became a symbol for me of a chance to start over.

In my first operation, Whitaker and his team spent six hours peeling back my face through virtually invisible incisions and gently scraping away the silicone, now the consistency of paraffin, from around the delicate web of facial nerves. (He estimated that they were able to remove 95 percent of the silicone.) They also removed slivers of bone from my skull and applied them to fill out my jaw. In two subsequent operations, the team removed layers of dermis from my groin and applied them subcutaneously to my face. These have since been reabsorbed through the mysterious process of atrophy that characterizes Romberg's syndrome.

"Doctors Continuing to Inject Silicone Despite FDA Warnings, Agency Says," reads a headline in the February 2, 1992 issue of the New York Times. According to the FDA, the use of liquid silicone for injections is illegal and has been, except for certain controlled conditions ("human experiments") since 1965.

It wasn't until 1992 that the FDA cracked down on dermatologists and plastic surgeons who were illegally injecting silicone. Before that, silicone injection was the ninth most popular procedure in cosmetic surgery; doctors made 59,285 injections in 1990 alone.

By the time we finish our frank exchange, my students and I understand each other. We are fellow travellers on the road to self-acceptance in a society that will try to judge us first on our appearance. We may be tempted along the way to succumb to the madness, to buy the product, to try the wonder cure when it is offered to us, to judge others by standards we know to be superficial and erroneous. Will we invest our energies in changing our appearance or in changing our vision of ourselves and others?

(Thanks for reading the whole long-winded thing! God bless you and "merci!")

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

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