Refusing to Submit to a Scarring Disease, a Young Mother Fights Time and the Odds to Help Find a Cure
updated 01/25/1988 AT 01:00 AM EST
•originally published 01/25/1988 AT 01:00 AM EST
Translated literally, scleroderma means "hard skin," which is one of its most visible symptoms. According to psychologist Mark Flapan, president of the New York-based Scleroderma Society, a patient-support group, "approximately three times as many women as men develop the disease, which results from an overproduction of collagen, the basic element of the body's connective tissue. It's scarring gone wild." Affected organs may thicken and harden, and their function eventually may be seriously impaired.
Devastated by the diagnosis, Monsky was determined not to give in to it and not to despair. She soon discovered that although an estimated 500,000 Americans have scleroderma in varying degrees of severity (it is neither hereditary nor contagious), most people have never heard of it and research funding is sorely lacking.
Her business skills intact, Monsky responded to her illness by forming the Scleroderma Research Foundation. In just 14 months the group, which is based in Mill Valley, Calif., has raised more than $500,000. This week in Washington, Monsky and her foundation directors are scheduled to meet with President Reagan to tell him about the disease and urge him to increase federal funding for research.
Still struggling with her own illness, Monsky received additional distressing news last August, when she was diagnosed as having an acoustic neuroma, a benign but life-threatening brain tumor that destroys motor function but is unrelated to the scleroderma. Doctors hope to remove the tumor surgically.
Remarkably, Monsky remains optimistic. "I'm determined to beat it," she says. She and Scher, both 34, and their healthy son, Max, 2, live in a rustic house in Mill Valley. Monsky spoke about her disease with San Francisco bureau chief Maria Wilhelm.
Until I became ill I thought I was Superwoman. I'd work 12-hour days at McKinsey and travel frequently. I'd come home and make a great dinner, clean up, go to bed, get up at 6 a.m. and do it all again. I was very ambitious and some would say driven to a fault.
Then in 1981 my health began to deteriorate. I started feeling very tired. My hands and face began to swell and I was finding it very hard to stay warm. In the middle of summer I was so cold, I wore lined mittens to and from work.
My doctor said he couldn't find anything wrong with me, so I kept pushing myself, but it got harder and harder to keep pace. Finally in February 1982 I decided to take a vacation and go skiing. I loved to ski, but I found that no matter how many clothes I had on, I was still freezing. Plus, my joints were killing me. Back at home it became impossible for me to stoop to pick up something off the floor.
I was convinced something was very wrong. So in April I started traveling around the country visiting the best rheumatologists and immunologists I could find. Some prescribed medications for my symptoms, while others suggested I see a psychiatrist. That made me feel terrible, and for a brief time I did start to question myself and think, "Can't you get your act together?" Deep down, though, I knew I was really ill and slipping physically. I could no longer hold a pen. I felt very alone, but my husband, Mark, didn't get discouraged. He always had a positive attitude and a plan. When one doctor couldn't help, he'd say, "Don't worry. We'll get to the bottom of this."
Finally, in the summer of 1982, doctors at the Stanford University Medical Center told me I had scleroderma. By that time areas of my skin had begun to harden and I had lost pigmentation around my joints. They did a skin biopsy, which showed connective tissue abnormalities. Blood tests revealed heightened levels of antinuclear antibodies, which also supported the diagnosis.
At that time I had never heard of scleroderma. The doctors told me that there were two forms of the disease—scleroderma, in which the effects are limited to the skin, a finger or an arm, and the intestinal tract. The second, diffuse scleroderma, which I have, affects the entire body. The kidneys, lungs, heart, digestive system, muscles, you name it. No one knows what causes it or how it's transmitted. The prognosis was also a bummer. Only 35 percent of patients with diffuse scleroderma survive more than seven years.
In the past sheer will and determination got me where I wanted to go, and that has helped me through this too. In August 1984, two years after I was diagnosed, we found out I was pregnant. There was a good chance I could lose the baby and that my condition would worsen. But Mark and I wanted the baby so badly, we decided we were willing to go through whatever was necessary. My pregnancy was horrible. Because the disease had affected my digestive system, I couldn't eat enough and had to be hooked up to an IV. In my fourth month I went into preterm labor and my gastrointestinal tract shut down. I was having contractions every five minutes. I was terrified. The doctors said I would lose the baby, but medication helped me turn the corner.
After that I was bedridden and went out exactly once during my pregnancy. I was in my eighth month when the doctors said, "Look, you've been through hell and the baby is big enough to deliver now." So they took me off all medication and Mark and I went to see Beverly Hills Cop. People looked at me as if I were any other pregnant woman. I was thrilled. It gave me new confidence that my sickly body still functioned. The next day Max was born.
I'm not like other mothers. I'll never be able to throw my child in the air; I can hardly lift him. My hands have atrophied and become noticeably deformed, making it difficult to change my baby's diapers. And because I have only 50 percent lung capacity, I can't push him up a hill in a stroller. As a result I have a mother's helper five days a week. Organization has become key. I keep a basket of rice cakes and other foods that Max eats in a place where he can get them. His clothes have Velcro or elastic, no buttons or zippers. Max is too young to understand about my disease, but he knows there are certain things Mommy can and can't do. She'll pitch the ball, but she can't run the bases. He also knows I love him.
Day-to-day life is so painful. My teeth are loose and I can tolerate only bland foods like chicken, fish and pasta. At various points in my illness, I've felt like a burden to Mark. I've told him that I would like him to have a healthy wife who can play tennis and go running the way we used to. But he says he'd rather be with me. It's taken a long time, but now I believe him.
It still hurts to have strangers look at me. My skin is so tight, my lips don't close anymore and I can barely open my mouth wide enough to brush my teeth. I see my face changing and it hurts to know there's more to come. The only things that keep me going are Mark and Max, my supportive friends and the Scleroderma Research Foundation. We're committed to finding a cure. In August 1986 we had our first meeting in a borrowed conference room in San Francisco. A year later we gave out four research grants of $25,000 each. The amount will double this year. I'm thrilled. I'm back in business and the medical community has become interested in the disease. But I won't be happy until the discovery of a cure. My goal is to make this foundation obsolete. My life, and the lives of others, depend on it.