"Mom, it's real hard to breathe," said Michael Berger, who had just come in from playing and was now sitting at the table eating lunch.

Michael has asthma, a disease that sometimes blocks his lungs, stifling the exchange of oxygen. He turned on his nebulizer, a device that sprays mists of airway-opening medicines into his lungs. It didn't help. His lips tinged with blue.

His mother, Janice Berger of Reston, took out a flow meter, a device to measure how much air was getting in and out of her 7 1/2-year-old's lungs. Peak flow, 200 liters per minute. Checked again, 150. Then 100. Then 60. Panic time. Normal is more than 275. Michael was losing ground rapidly, an indication that his lungs were clogging shut.

Janice Berger took out an Epi-Pen, a syringe filled with the stimulant adrenalin -- definitely for emergencies only.

"Mom, are you going to use that?" Michael asked nervously.


His blue color deepened. She jabbed the Epi-Pen into his thigh and then called 911, insisting that they send an ambulance with paramedics.

The ambulance arrived quickly but went to the wrong house first. Michael sat hunched over on the floor by the door, holding his own, barely. Finally the paramedics arrived and injected more adrenalin. The stethoscope began to detect the hiss of air squeezing into his lungs. The drugs had started working.

They took Michael to the emergency room for additional treatment. It helped. His lungs opened up, and he could breathe again. Then the doctor sent him home.

In less than three hours, Michael went from being a normal, happy child to nearly dying and back again to being a normal, happy child.

"Mom, can I go out and play?"


"Letting go," Janice Berger said, "is the hardest part." Stopping a Killer

Between 15 million and 18 million Americans regularly ride the asthma roller coaster. Even Superman -- well, Christopher Reeve -- has asthma, as do Elizabeth Taylor and Patrick Kennedy, son of the Massachusetts senator. Anyone can get it at any age.

Asthma is generally considered an inconvenience to grow out of, and some people even see it as primarily an emotional disturbance. Yet it is a serious disease with physiological, not psychological, roots. Attacks are triggered by allergies or something as simple as exercise, aspirin {related story, Page 18} or a breath of cold air.

The name itself comes from the Greek word for panting or breathlessness. Asthma is a chronic disease with occasional acute attacks that can kill. One minute the asthmatic is fine; the next, he's suffocating. There is no cure.

While most asthmatics do not have symptoms as serious as Michael Berger's, 10 percent of them do -- that's 1.5 million to 1.8 million people who suffer severe asthma. Last year, more than 4,000 Americans died in asthma attacks.

Compared to the total number of asthma cases, deaths are rare. And certainly this breathing disorder claims fewer lives than auto accidents or major diseases such as cancer or heart attacks.

But asthma deaths are on the rise, both in the United States and in other countries. No one knows why.

"Most of the deaths are actually adults, and more of them are older adults than younger people," said Dr. Floyd Malveaux, assistant professor of clinical immunology at Johns Hopkins Medical Institutions and an associate professor of medicine at Howard University College of Medicine.

What's more, while the death rate has risen 25 percent between 1979 and 1983 for the population as a whole, the rate of asthma-caused deaths among blacks rose faster -- 45 percent. Asthma kills all blacks at a rate two to three times higher than it does whites. For those between 15 and 45, asthma killed blacks seven to eight times more often than whites, according to National Center for Health Statistics data.

Another study by Dr. N. Franklin Adkinson Jr. of the Johns Hopkins Medical Institutions also shows that the number of new asthma cases is on the rise among poor, urban populations -- a population that tends to be predominantly black, at least in cities such as Washington or Baltimore.

The reasons are not totally clear, but there are a number of ideas.

For one thing, said Dr. R. Michael Sly, chairman of allergy and immunology at Children's Hospital National Medical Center in the District, black children seldom get cared for by an allergist or other asthma expert.

A Baltimore study showed that black schoolchildren used the emergency room as their primary source of care for asthma twice as frequently as white children. That means they did not get follow-up care or special training in how to use their medications to prevent an asthma attack.

"You cannot go to the emergency room to get treated, and then simply go home and not get follow-up care," Malveaux said. "The follow-up care is the missing ingredient."

Without such care, an asthmatic is much more likely to suffer major attacks that require hospitalization. For example, from 1961 to 1981, hospital admissions for childhood asthma in the District increased 18-fold, even though the overall population of children increased less than 1 1/2 times.

More important, Malveaux added, "the deaths are the tip of the iceberg."

Asthma can make children deathly ill, incapacitated, without killing them. It debilitates, leaving many unable to walk stairs or run around on the playground.

"That is the morbidity of asthma," Malveaux said. "That is a much more serious problem in the community."

Asthma causes more missed days of school than any other condition -- children with moderately severe asthma can miss one third of the school year. Asthma, with allergies, accounts for one out of every 11 visits to the doctor's office, or 9 percent. And it's the leading cause of pediatric hospitalizations and the sixth-leading reason for adult admissions to all hospitals.

Altogether, Americans spend more than $11 billion each year on medications for asthma and allergies.

The deaths and unrelenting disabilities are especially troubling because the medical knowledge exists to prevent them, said Dr. Michael A. Kaliner, head of the allergies disease section of the National Institute of Allergy and Infectious Diseases, a part of the National Institutes of Health. "Five years ago, we couldn't treat it as effectively. Today, we have the drugs; we have the knowledge. Basically, the patient has to find the doctor with the drugs and the knowledge."

That seems to be the tough part. There is a growing concern among some allergy physicians that a significant number of asthmatics are not getting proper care, are not getting their disease under control and have not been properly taught to prevent their symptoms. The statistics of rising cases and deaths seems to bear that out. For poor populations in the inner city, it is more difficult to get access to an asthma specialist than it is for middle-class patients in the suburbs.

And even getting the doctor in the suburbs may not be enough. "Patients with asthma live with this disease for so long without learning much about the disease," said Dr. Allan Weinstein, a District allergist and author of "Asthma: The Complete Guide to Self Management of Asthma and Allergies for Patients and Families" {McGraw-Hill, $17.95}. "It's critical for patients to learn how to take care of themselves."

But it isn't all the asthmatic's responsibility, said Kaliner. Some of it falls on their doctors.

"All the patients who die are being inadequately treated. Poor treatment is part of it, and not having the right doctor." And, he said, "there is a problem with doctors not knowing what they are doing."

Kaliner understands that this viewpoint won't win him friends, but as chairman of the American Board of Allergy and Immunology, the certifying board for allergists, he knows that between 60 and 70 percent of medical students never receive any allergy training before they graduate. Many of these students go on to become internists or general practitioners who end up taking care of patients with asthma.

In the medical marketplace, there also is the issue of competition among different types of physicians for patients. The nearly 35 million Americans with allergies and 15 million or so with asthma represent a pretty big marketplace. Some doctors would rather hang onto their patients, even if they are not specifically trained to treat these diseases, rather than refer them elsewhere, Kaliner said.

"You have all the ingredients for lousy medical care," he said. "You have a lot of quasi-medicine going on."

At the same time, the gaps in asthma care can't all be blamed on doctors. Some patients die even when cared for by an allergist, said Children's Sly.

Catching Your Breath

All this has occurred at a time when physicians finally have several safe and effective drugs to both prevent and control attacks.

Some treatments are common sense, such as avoiding the dust or molds that can trigger allergic asthma. Immunotherapies, such as allergy shots, also can help.

But the big advances have come with the development of new drugs to prevent attacks.

There are four basic types of drugs: Adrenalin sprays and the other bronchodilators, which relax the smooth muscles that can choke the bronchi. They are often used first because they work directly in the lungs to open airways. While they work well, some of them, especially the early drugs, caused side effects, such as a racing heart. The methylxanthines (such as caffeine) have been used to clear obstructed airways for nearly 150 years. These drugs -- the best known is theophylline -- are most effectively used as a preventive. Recently, tests have become widely available to monitor blood levels of theophylline, enabling physicians to prescribe an accurate dose that works without significant side effects. Theophylline inhibits swelling of the bronchi and relaxes the smooth muscles.Disodium cromoglycate, or cromolyn, is the new kid on the block. This drug is primarily used to prevent asthma attacks because it affects the cells in the lungs that release histamine and other immune system chemicals that cause inflammation and can precipitate attacks. If these cells are prevented from reacting to allergy-provoking stimuli such as dust, then the asthma attack also can be prevented.

Ketotifin, an antihistamine not yet approved for use in the United States, seems to work in much the same way as disodium cromoglycate. It helps those few individuals unable to take some of the other asthma medications.Corticosteroids probably are the most important advance in asthma care, Kaliner said. These drugs suppress much of the immune system's response to allergens when all other treatments fail and thus abort an asthmatic attack.

The problem, however, is that in some patients, they can have profound side effects, such as weight gain, easy bruising, cataract formation, osteoporosis, emotional changes and, in children, disorders in growth.

Oral doses seem to carry a greater risk of complications than topical steriods, which can be sprayed into the lungs, for example.

"A lot of doctors and patients have a phobia about corticosteroids," Kaliner said. "They fear the systemic effects."

"The risk of steroids is not with their short-term use but with their long-term use," Weinstein said. Patients sometimes need steroids to control an acute attack and usually can later control the disease with non-steroidal drugs.

As good as today's drugs are, Kaliner expects things to get even better. "There is a real surge of interest by drug companies in allergy and asthma," he said. "The prospects for new drugs are very high."

Drugs Alone Are Not Enough

Although the new and evolving drugs may be powerful, they alone are not enough. Asthmatics have to know how to use them correctly. For the medical profession, compliance and patient education have always been difficult issues to address.

The situation is all the more difficult because there is a lack of sophisticated education programs for the general public on all types of illness, said NIH's Kaliner.

For example, said Weinstein, "85 percent of all asthmatics using inhalators use them incorrectly."

Asthma, as a chronic disease, is especially a problem; it can't be fixed by doctors' simply handing out drugs. And patients don't feel bad all the time, so they tend to forget to take their medications, particularly if they cause unpleasant side effects.

Asthma is a disease in which the patient, or a parent, has to become his or her own expert, said Weinstein. They must learn to handle each crisis alone. Even children must learn quickly.

"It's just like these little monsters come up and block your air tubes and you can't breathe," said 8 1/2-year-old Brooke D. Sanders of Fairfax.

Brooke and her mother, Nancy Sanders, founder of Mothers of Asthmatics Inc., have struggled to learn how to battle the monsters. Knowledge comes slowly, painfully.

The first few doctors helping the Sanders simply handed out drugs. They did not really teach Nancy or Brooke how to respond as different situations arose. Long sleepless nights became common; trips to the emergency room became all too familiar. She had no support system.

"I felt I was alone," Sanders recalled.

The worst times were in the beginning, when Brooke's severe asthma was uncontrolled. One bad attack began at school on a Friday. Already taking half a dozen drugs a day to prevent asthma attacks, Brooke began to fight the mounting tightening in her chest with her "puffer," an aerosol pump that sprays a mist of medicine into her lungs. It didn't help.

Sanders rushed to the school with an armload of medicines. "She gave me a breathing treatment, and it helped a little," Brooke recalled, but her problem breathing didn't go away.

By the next day, she was worse, so they headed for the emergency room. "I had to have an i.v. (intravenous line) in my hand," Brooke said. "They had to stick me so many times and it hurt. I stayed there all day. I didn't like it, but I finally got better."

Nancy Sanders remembers it a little more dramatically. At one point in the hospital, Brooke had a reaction to the adrenalin injections. Instead of opening Brooke's lungs, the drug caused them to close even tighter -- a "paradoxical response," it's called.

"She was very close to losing her life, very suddenly. I was sitting on the bed reading to her. For the first time, she started to panic. She said, 'Mommy, get me out of here. I can't breathe. I need fresh air.' Her eyes were purple; her skin was white."

The medical staff rushed back in, injecting more drugs. Sanders recalled overwhelming surreal sensations of being disconnected, of watching a play that she was not in.

"I was watching something that had nothing to do with me," she said. Her baby was dying, and there was nothing she could do.

"Death does not always happen because of ignorance or our inability to cope," Sander's said. "It happens when we least expect it."

This time the drugs worked. Brooke's lungs began to open again. Two hours after she almost died, Brooke went home. Said her mother: "That happens all the time."

The attacks come less often now. The drugs keep her disorder under control, but the disease still requires constant attention. To prevent attacks, she takes the experimental drug, ketotifen, as part of a clinical trial run by Georgetown University physicians. The other key anti-asthma drugs -- theophylline and steroids -- didn't help. Oral steroids upset her stomach. She remains exquisitely sensitive to theophylline's side effects.

Brooke also takes a variety of other drugs, depending on what she expects to be doing that day. The routine may include nose sprays, Nasalcrom -- a form of cromolyn -- and Decadron Phosphate Turbinaire, a nasal steroid; pills, including Seldane and Bromfed; two antihistamines and breathing treatments with Ventolin to open the airways; Intal, another cromolyn preparation, and Vanceril, a topical steroid; and Tagamet for her stomach.

All these drugs, all this technology. For families just learning about the disease and the myriad of drugs, it can be overwhelming.

In the middle of the night, the parent becomes the primary caregiver and has to decide which drug to give or when a trip to the emergency room is necessary. For the parents, there often is a sense of helplessness.

Sending the children to school is no different. After struggling to maintain control over a child's disease for six or seven years, parents are expected to suddenly pass them into the hands of teachers, who are ill-equipped to understand and appreciate the complicated nature of the disease, let alone know what to do in an emergency, observed Sanders and others.

A common response by school officials is: How sick can the kid be? He doesn't look sick.

Last fall, 12-year-old Thaddeus Q. Wade of Memphis, Tenn., died at Havenview Junior High School after having trouble breathing. The details are now under review in a $2.5 million wrongful death suit brought by his father, Alora H. Wade, against the Memphis Board of Education.

Wade charged that school officials failed to seek prompt medical treatment for the boy after he experienced trouble breathing -- an ambulance allegedly was not called for more than 90 minutes -- despite the fact that his mother had filled out a Pupil Emergency and Health Profile card that detailed the child's history of acute asthma.

Sanders and her organization, Mothers of Asthmatics Inc., of Fairfax, participated in the production of a videotape so teachers and school administrators could learn about asthma and what needs to be done to safeguard the children.

"The more you understand asthma, the less you fear it. The less you fear it, the better you are able to manage it," Sanders said.

"Parents are called overprotective and extremely emotional," Sanders said. Before her own daughter almost died in a hospital emergency room, the medical staff thought "I was just another crazy mother.

"It's not our fault."