Lupus Sufferer Does Battle Against ‘Silent Disease’

Jeramie Dreyfuss has spent a great deal of her life in hospitals being treated for lupus, a chronic inflammatory disease in which the body’s immune system makes antibodies that attack healthy tissues and organs. Varying forms of the disease can affect the skin, causing a rash and lesions, or any body organ. Symptoms differ widely from person to person, and in some cases it can be life-threatening. There is no cure for the disease, but some forms can be treated with medication.

In the course of her battle with the disease, Dreyfuss became involved with the Lupus Foundation of America, a nonprofit organization funding research and awareness programs. On Tuesday she and her husband, actor Richard Dreyfuss, will be honored at the foundation’s fund-raiser at the Beverly Hilton.

The couple also established the Jeramie Dreyfuss Laboratory for Lupus Research at UCLA. Expecting her third child in August, she talked with Times Society Writer Jeannine Stein about her continuing struggle to lead a normal life while lobbying to bring about understanding of the disease. “I was diagnosed with lupus when I was 28, and I’m 41 now. But I think I’ve been sick since I was 16. Something very bizarre happened to my leg and I almost had it cut off. The following year I almost died. I was sick all through my 20s, when I went away to New York to become an actress. I spent half my life in hospitals with very strange illnesses. When I was 28 I had peritonitis five times in one year. The fifth time I got it I was at Cedars-Sinai, and they finally diagnosed me with lupus. It takes an average of 10 years to diagnose it.

“I couldn’t find any literature on lupus, and I finally went to the Cedars-Sinai library. One book said there’s a life expectancy of five years. It scared me so bad. Twenty-eight was a very bad year; I didn’t expect to reach 30. It sounded so awful I stopped seeing the doctor and denied the whole thing. I continued to go in and out of the hospital for different things, but I didn’t talk about lupus. I totally denied the whole thing until after I had our daughter (6 1/2 years ago), and it hit me with a vengeance two weeks after she was born. I lost the use of both my arms for two years.

“Then I was sick one summer with back problems, and I basically lay on the floor most of the summer and finally wound up in the hospital. At that time I contacted the Lupus Foundation, and they sent me literature. I hated everything I read. I just did not want this disease. This was not going to be my life or my future.

“But I was constantly having to let people see the weird things. I got hurt very easily, and having been a gymnast and involved with sports all my life until I was about 21, it was very hard to let that go.

“You learn to have two personalities. There’s one that deals with the pain at all times, trying to figure out how to sit, how to move, how to do anything. And the other part is the happy part that goes around and presents itself to the world, and you learn to separate the two. It’s amazing. I’ve dealt with pain since I was 16. You get very good at it, or as with most lupus patients, they don’t get very good at it, and they become severely depressed and they lose their husbands and their lives fall apart and they get very angry.

“I grew up with two sisters; one’s a paranoid schizophrenic, and the other is schizophrenic, and they’ve been in and out of mental hospitals their whole lives. And they’re so smart. My mother’s very depressed. I grew up surrounded by women who were very suicidal and depressed. I’m the exact opposite. Maybe it’s my defense against the way they are. Nothing gets me down for long. You can’t get me depressed.

“I’ve accepted this as a challenge. I love being alive so much that this is my challenge. And that’s why for years I’ve been asking God, or whatever, I wish there was a cause that I could really make a difference with. And I was sort of led to this.

“I’m not afraid of lupus. I’m not afraid when I get sick. I feel like there’s always something new around the corner, always something you haven’t had before. You just learn to deal with it. I feel so lucky because I haven’t had kidney involvement or brain involvement. You’re always on intermittent medication, and you have a very close relationship with your doctor.

“I think you just learn to survive. Plus, I have a great life now. I love my kids, and Richard’s fabulous. He’s the best thing that happened to me. If I didn’t have Richard I don’t know where I’d be today. If I’m sick, he’s very concerned. He’s the first to rush me to the hospital. He’s been very helpful with any lupus things; he went on ‘Larry King Live!’ and went with me to Washington two years ago to testify before the Senate for money for research--we did get $7 million for lupus research.

“And then there’s Amy Irving, my best friend, who kept saying, ‘What can I do? I want to do more.’ She never said, ‘So long.’

“This is an unglamorous disease. It’s not popular and it’s got a terrible name. It’s been hard for me to admit to people that there’s anything wrong with me. I just take it one day at a time and trust my doctors and go along with my life. I’m not a victim.

“But I’m really interested in lupus research because of my children. They’re at higher risk and I don’t want them to ever deal with it. I can deal with it, but I when I see children with it, I feel really sad. My children know me usually as well, sometimes as sick, but they handle it really well, I guess because Ben’s been through his things as well. (Ben, 3, was born deaf and blind, with Peters’ anomaly, which doctors say was not related to her lupus. He can now hear and has sight in one eye.) We do things the best we can.

“I became involved with the Lupus Foundation of America through my doctor, Dr. Daniel Wallace, at Cedars. I think he realized I was in a position to help. Nancy Horn (president of the Lupus Foundation of America) started calling me, asking me if I would do this and that, but I’m not a public speaker, and it scared me to death. But I had had a little bit of experience with this because I had helped the University of California, San Diego raise $7 million to build an eye research center; that’s where they were so wonderful to Ben.

“Today I get letters from people all over the country, and I’m not very good at answering all of them; sometimes I call them. I got very involved with a woman from West Virginia, and Nancy and I have been able to really help her. There’s an 18-year-old boy who calls me every day. I’ve collected a lot of ill children along the way who call me. Sometimes it’s a burden, sometimes it’s very hard for me. It’s a lot, but that’s my gift. I’m not an actress, I’m not brilliant, but I care. So that must be my thing.

“I think everyone has a voice, and I think everyone should be involved. Don’t sit back and wait for anyone else to do it. I really believe we all have to take a really big stand in our treatment and our cure. This has been a silent disease for a long, long time. And I’m not going to be quiet. I have a lot of hope. I think we’re going to cure this thing.”

For more information on lupus, contact the Southern California chapter of the Lupus Foundation of America, 1101 S. Robertson Blvd., Los Angeles, Calif. 90035; (213) 278-9530.