Ryan White - My Own Story (34 page)

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. Most AIDS patients die within two years of their diagnosis. 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.

If I need a blood transfusion, could I catch AIDS?

Today that’s very very unlikely. When people give blood now, it’s tested carefully several times to make sure that it’s not contaminated with the AIDS virus. Nowadays, hemophiliacs don’t have to worry about their Factor. Non-hemophiliacs who know they are having an operation and are going to need a transfusion can even donate their own blood so that it’s there when needed.

What if I give blood?

That has never been dangerous. When you give blood, the blood bank uses a brand-new needle for each donor. There is no possible way you could pick up the AIDS virus by giving blood.

What if I get a vaccination?

In the United States there’s no evidence that getting a shot to immunize you against smallpox, polio, measles, mumps, whooping cough, or any other disease will transmit the AIDS virus. Doctors use a new needle and a new syringe for each patient, for each separate innoculation.

How could I catch AIDS?

Now that the blood supply is safe, there are just a few ways. The AIDS virus lives in human blood, semen, or vaginal secretions. Outside the human body, it can survive in small amounts of blood in hypodermic needles or syringes.

You can catch AIDS by doing certain things that let an infected person’s blood or other bodily fluids into your own bloodstream. This could happen if you have sex with an infected partner without using a condom (latex, preferably with spermicide containing nonoxynol-9) or if you use a hypodermic needle without sterilizing the needle first. You risk using a contaminated needle if you shoot drugs, or if you get tattooed, have steroid injections for body building, have acupuncture treatments, or have your ears pierced
by anyone who isn’t a professional.

Having unprotected sexual intercourse with a stranger whose sexual history you don’t know or with several partners is also very dangerous. Even if only one partner is infected, he or she could pass the virus onto you and then you could infect other people. Remember that you can’t tell if someone is healthy by the way he or she looks. It’s also risky to combine drinking or drug use with sex. Even if you meant to play safe, you may lose your head and forget.

By having sex without using a condom, an infected man can transmit the AIDS virus to other men or to women. Through unsafe sex, a woman can also infect men and perhaps other women. If a woman is infected with AIDS and becomes pregnant, there’s about a thirty percent chance that she could pass the virus along to her newborn baby. Today thousands of babies are born with HIV infection and will later develop AIDS. They could be infected before, during, or soon after birth. A mother who has AIDS and breast feeds could pass the HIV virus to her baby in her milk.

So even if people who are HIV positive or who have AIDS are feeling quite well, they have to make sure they don’t infect other people. They cannot give blood, share needles, or have unprotected sex. Women with AIDS should not become pregnant or try to nurse.

What’s safe sex?

Of course, not having sex is absolutely safe. So is sex with one faithful, long-term partner who is not HIV positive. Hugging, stroking, dry kissing, massage, and masturbation are all safer sex. If you’re having sex with more than one person, if your partner is infected, or if you don’t know what the state of his or her health is, you
must
use condoms during sex—anal, oral, or vaginal.

You can buy condoms in most drugstores. You don’t need a doctor’s prescription, and you don’t have to be any particular age. Large drugstores and discount chains display them in sections marked “Family Planning” or “Prophylactics,” so you don’t have to ask for them. In New York City, where there are over 40,000 people with AIDS—twenty percent of all cases reported in the nation—condoms are distributed in public high school clinics.

Condoms are inexpensive. Use latex condoms—not ones made of animal skin, which the AIDS virus can penetrate. Condoms have no side effects. If you use condoms properly, they will prevent pregnancy and will protect you.

For more on safe sex and using condoms properly, see the RESOURCES section, especially the video
AIDS: Changing the Rules.

Don’t condoms break or leak?

Sometimes, but not if you use them properly. Practice on an unpeeled banana. Most condoms come sealed in flat foil packages. Unwrap the flat disc and place it over the tip of the banana, with the raised rim facing up. If this ring faces down, you’ll be putting the condom on backward. Push down on the ring, and the condom will slide snugly down around the banana. Some condoms have a space at the tip to hold semen. If a condom doesn’t have this reservoir, make your own by pinching its tip as you roll it on.

Condoms will break or leak if they are too old or if they have been exposed to heat. All condom packages have an expiration date. Keep them at room temperature, not in a wallet or glove compartment. Never buy or use an unsealed condom, and don’t reuse them. Never use a condom along with petroleum jelly or any other lubricant with oil in it; the condom may break. Always use K-Y jelly, a water-based lubricant.

Can you catch AIDS from having sex only once?

If your partner has the virus and you don’t use protection, yes—just as you can get pregnant from having sex just once. Alison Gertz, who’s twenty-five now, said she was infected at sixteen after having sex only once with a bisexual man who later died of AIDS. Now she speaks to other teenagers about avoiding AIDS.

How can I tell if I’m at risk of getting AIDS?

You’re not at risk unless you’re behaving in a risky way. That means taking drugs intravenously, or having unprotected sex.

Can kissing spread AIDS?

As far as we know, the AIDS virus has never been transmitted during any kind of kissing. But tiny amounts of the virus are found in an infected person’s saliva, so unless you are sure your partner is free of the virus, kiss him or her on the cheek.

Can I touch someone who has AIDS?

Certainly. People with AIDS need affection as much as everyone else—if not more. If you touch or hug or kiss someone with AIDS on the cheek or shake hands with him or her, you are not in danger.

What if you are splashed with the blood of a person with AIDS and have a small cut?

The AIDS virus could enter your bloodstream, but that’s not very likely. For the infection to be passed from one person to another, there usually has to be
direct blood contact:
The person’s blood has to enter your bloodstream. That’s because the AIDS virus cannot survive very well outside of the human body. It can’t live in water, and you can wash it off with soap.

Sometimes hospital workers or family members looking after people with AIDS do get stuck with a needle that’s been used on an AIDS patient. If they actually have been infected, they will test positive for HIV within three months, but most will not be infected; the chances are about one in two hundred.

Is it safe to be “blood brothers” or “blood sisters”?

Not with a child who has AIDS. In this playground ritual, children prick each other’s fingers and press them together to mix their blood. If one child has AIDS, it would be possible to infect the other because there is direct blood contact. But right now, we know of no cases of children being infected this way.

Can you catch AIDS at the dentist’s?

It’s technically possible, if the dentist had a cut on his or her hand, and wasn’t wearing gloves, and some blood fell onto your bleeding gums. However, this would be extremely unlikely. As far as we know, there is only one case of a patient thought to have been infected by a dentist. At the moment, this case is something of a mystery: Investigators have not been able to figure out exactly how the dentist’s infection was passed to the patient.

Nowadays, dentists are supposed to wear masks and latex gloves during dental procedures to protect their patients—as well as themselves. A patient with AIDS could infect a dentist. Many people with AIDS have trouble finding dentists who are willing to treat them. Luckily, this was not a problem for Ryan. He was able to get dental care at Riley Hospital.

How can’t I catch AIDS?

You can’t catch it from normal, everyday contact with someone who has it. The AIDS virus is not airborne, so it is not dangerous to live in the same house or be in the same classroom or day care center or office with someone who has the disease. In the United States no family members living with someone who has AIDS, no children in school with someone who has AIDS, and no coworkers working with someone who has AIDS have been infected through casual contact.

You cannot pick up AIDS from a doorknob, a telephone receiver, or a toilet seat. If someone with AIDS sits next to you or coughs or sneezes on you, you are not at risk. If you bump into someone with AIDS in a locker room or gym, you will not be infected. You cannot catch AIDS from someone’s perspiration, urine, saliva, or tears. Small amounts of the virus have been found in tears and saliva, but there are no known cases of the virus being transmitted this way. It’s probably a bad idea to share razors or toothbrushes, which might have tiny specks of blood on them. Wear rubber gloves to clean up feces or vomit, which may contain small amounts of blood.

AIDS is not spread in food or drink, so it is safe to share a meal and utensils with a friend who has AIDS. You can eat off the same plate, or even drink from the same glass or pass a can of soda back and forth. Using the same water fountain, comb, hairbrush, toothpaste, money, books, computer, or any school or office equipment is quite safe. So is swimming in a public pool, sitting in a hot tub or steam room, or sharing a shower. You can share a towel or sheets or a sleeping bag. You can play games or sports with someone who has AIDS just as you can with any other friends.

You can’t catch AIDS from pets or farm animals, and they cannot catch AIDS from people. Rats, mice, or mosquitos don’t spread AIDS. Neither do fleas, lice, bed bugs, or any other insects.

Where did AIDS come from? How did it start?

No one knows. Scientists have had several theories, but there isn’t enough evidence to say for certain. They do think that AIDS probably has been around for a long time, and wasn’t noticed until it became an epidemic among certain groups of people who were at high risk. For example, by analyzing tissue samples that had been stored, doctors in England recently discovered that a twenty-five-year-old sailor who died in 1959 actually had AIDS. At the time of his death, no one could figure out what was really wrong with him. So far, this is the oldest documented case of AIDS, but others may turn up.

Today about one million people in the United States are probably HIV positive. By the end of 1993 up to 480,000 will have AIDS, and about 320,000 will have died. Around the world as many as 10 million people may be infected.

Do people with AIDS take medicine every day?

Usually. Most take several different medicines for various reasons. As for medicine for AIDS itself, you don’t have much choice. There are only a few drugs for AIDS, and none can cure it.

Right now many doctors think that the earlier you start taking medicine, the better your chances of living longer are. So if you think you may be infected, it’s important to take the AIDS test right away, find out for sure, and start treatment promptly.