Ryan White, My Own Story

An excerpt from a touching tale of a courageous young man, his battle against fear and hatred, and his fight to educate the public about AIDS.
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Updated on: October 19, 2004
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How does it feel to have AIDS? Does AIDS hurt?

Many people with AIDS are like Ryan: They feel fine for long periods of time. People with AIDS can take medicines to help strengthen their immune systems and ward off dangerous illnesses that don't threaten healthy people. But AIDS can be very uncomfortable, and some of the drugs you may be given have unpleasant side effects.

Many of the symptoms of AIDS feel rather like having the flu. Like Ryan, you may have night sweats, fevers, a cough, and shortness of breath. You may have swollen lymph glands that last a long time—six weeks or so—in your neck, under your arms, or in your groin. You may lose your appetite and have diarrhea constantly. You may feel very tired and run-down. Some people with AIDS say they often feel as though they've aged prematurely. You may have persisting skin rashes, or white patches or sores in your mouth that last a long time. If you have Kaposi's sarcoma, you may find patches or bumps the color of bruises on any part of your body.

But many other diseases besides AIDS have these symptoms too. To be absolutely sure you have AIDS, you must take a test. A sample of your blood is checked to see if it contains antibodies to the HIV virus, which causes AIDS. If it does, then at some point in the past, the virus has entered your body and you have been infected. This is known as being HIV positive. If you are HIV positive, you are capable of infecting someone else, whether or not you are actually sick. In fact, you may look and feel perfectly fine. You should be very careful to avoid other infectious illnesses, like hepatitis or sexually transmitted diseases besides AIDS. Extra infections could trigger the AIDS virus, or make full-blown AIDS worse.

Today there are many people who are HIV positive but who have never had symptoms of AIDS. Actually, in this country there are more people who are HIV positive than there are patients who are sick with AIDS. Because scientists have been studying this disease such a short time, they don't know whether everyone who is now HIV positive will eventually come down with AIDS.

Will everyone who has AIDS die?

As far as we know right now, AIDS is fatal. But infected people react differently to the virus. Some people test positive for HIV but go for years without symptoms. Some people who are infected get very sick right away and die within a short time. Others go back and forth between sickness and health. Still others can live longer and stay quite healthy, the way Ryan did.

Ryan may have stayed well for so long partly because he was young and strong when he was infected. A new drug, AZT, helped him too. Today doctors know more about how to use drugs to treat people with AIDS, so that many do live longer. Some adults who have AIDS are still living after ten years or more, and a few children who were born with AIDS have lived up to age twelve or thirteen.

Can you tell if someone has AIDS by how he or she looks?

No, not at all. Some people who have AIDS look like anyone with a deadly disease. They're pale and thin. They move slowly and seem very tired. If they have Kaposi's sarcoma, they may have purplish marks on their faces or bodies. But many people who have AIDS are like Ryan: They don't seem sick at all. They look like everyone else. You can't tell if someone has AIDS just by looking at him or her.

How come no one knew that the Factor VIII Ryan got had the AIDS virus in it?

No one knows exactly when Ryan got the transfusion that infected him. Whenever it happened, it's certain that no one knew much about AIDS then. Doctors found what they think was the first case in the United States in 1978. When Ryan got contaminated Factor, no one realized that the AIDS virus could be passed from one person to another by accident in transfusions of blood or blood products.

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