Nobody knows how many people have Werner syndrome. A very rough estimate is that for every million people, between one and 20 have the disorder. When her condition was diagnosed, Ginger was told that there were perhaps 125 patients in the country. She has not met any of them, for there is no support group or Internet site.

Photograph by Andrea Modica

Ginger and Tom enjoy a quiet moment at home in Choctaw, Oklahoma, in July. Arranging transportation to Ginger’s medical appointments these days is difficult. When she tells Tom that any other man in a similar situation would leave his wife, he says, “Honey, I’m not like other husbands.” In August Tom relocates to Ogden, Utah, because of a job change. Ginger makes plans to move to a nursing home


near his work.

Ginger told me that as far as she knew there were no other cases of Werner in her family. When she was a baby in Texas, her parents divorced and couldn’t afford to keep her, so a friend of her mother’s adopted her. “Their genes didn’t click,” she said of her biological parents. “My mother was short, but not as short as I am.”

Actually their genes did click, if not in the way she meant. I remarked to Ginger that her mother and father were most probably carriers of the Werner gene. Although both parents were unaffected, each would have transmitted one bad copy of the gene to Ginger.

The mother in Ginger’s life is her adoptive parent. The two have remained very close, speaking to each other on the phone every day. The bones and tissues of the woman over 80 are in better condition than her daughter’s, an irony they do not discuss.

Ginger grew up in a farming community and was active in sports. Her height wasn’t particularly noticed, but her mother kept remarking that Ginger’s size 4 feet ought to grow bigger. They didn’t. “I always felt like they might grow, even after I got married,” Ginger said.

Ginger met Tom at a dance at the state university they attended in Alva, Oklahoma. Outgoing, she liked to rock and roll, twist, slow dance to “whatever was playing.” Tom was younger than she was and a little shy. They were married in 1969.

On the mantelpiece in the living room of the Webers’ home is a picture of the young couple. Ginger was red-haired and bright-eyed beside Tom, a foot taller.

“We’ve been married almost 32 years. I told my husband I was going to keep him young—I was 21 and he was 19—but that’s no longer going to happen. I did the opposite,” she said, without any emotion.

“I started my period at 10 and quit having my period at 27. I had two miscarriages. I lost a little boy in ’72 and later a girl in ’77, and both times I didn’t know I was pregnant.”

After the first miscarriage she dropped out of college. Tom had good jobs in the computer industry, so Ginger didn’t feel pressure to work. She was a beautician for a while, and a receptionist, but she was experiencing mounting problems with her body. She stopped work in 1992, after Rubin told her how fragile her bones were.

Still, she traveled with Tom on his business trips, and she didn’t hang back. “I said to him not long ago, ‘I’m gonna take you dancing again.’ And I will.”

When I saw Ginger, however, she was confined to the house except when her husband was able to take her out. Other than Tom and her mother, she had no friends to mention, nor did she have helpers in the community. As a treat for her and a favor for me, Ginger and I planned to have lunch in town, and I would drive her to a scheduled medical appointment. If her husband took her to the doctor, he had to rush home during his lunch hour to pick her up, and then she had to sit in the waiting room until he came again at the end of the day.

Here is what Ginger has suffered since her disease was diagnosed: Appendicitis in 1993. A broken femur (the other one) in 1996. Hip replacement in 1997, two months after she fractured her pelvis without realizing it. A broken arm in 1998: “Again, I didn’t fall or anything.” But the bone of the arm pierced the skin, and the external wound would not mend, necessitating plastic surgery a year later. A cornea transplant in her right eye in 1998 and in her left eye in 2001, two weeks before my visit.

The fractures didn’t concern her. She talked primarily about the ordeal of her feet. “I used to have muscles, and I walked a mile a day, but now my feet burn all the time.” Gradually her joints had become fused, so that her brittle legs now rested upon little bony blocks. Recently, Ginger had been plagued with topical ulcers and floating deposits of bone that cropped up in the paper-thin skin of her feet.

“They told me I’d have these formations off and on because . . . because of the way I am,” Ginger said. She avoided using the term Werner syndrome, focusing rather on her “little problems here and there” and attempting to divide and conquer them one at a time. “Due to what I have, they don’t know how to doctor me.”

There is no cure or treatment for Werner. In an effort to strengthen her bones, Rubin gave her a growth factor called IGF-I—donated by a drug company because her insurance would not cover it—but the experiment had almost no measurable benefit. Now she was taking calcium and sodium fluoride. Positive thinking was her credo and her therapy. “I just try to keep more up than down,” she explained. Once she chewed out an orderly for saying “terminally ill” in her presence. “‘Hey—that’s not in my vocabulary!’”

Rubin believed that attentive medical care had enabled Ginger to survive longer than is typical for a Werner patient. When the doctor admitted to Ginger, then 44, that Werner patients generally did not live past 48, she vowed to him, and now to me, “I’m going to outlive that, I’m going to beat that. I’m going to be the exception to the rule. There’s always an exception to the rule,” she said, nodding bravely, pleased by the thought that she might be one.