Living with leukemia


People who have survived childhood leukemia have a positive attitude and a will to live. The symptoms of leukemia include fatigue, bruising and joint pain. The side effects of treatments such as chemotherapy and radiation therapy include nausea and hair loss.

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I really had no idea what was in store for me…I cried for about 15 minutes…I remember…a girl about 12 came into my [hospital] room one day and said she had had leukemia for six months. She looked so normal and healthy, I really began to think I could get well and live normally… that was long ago; I’m now just fine!” — Julie C., age 18.

As a child, Julie had leukemia–the type of cancer most common in children. It is estimated that of more than 28,200 new cases of leukemia diagnosed in 1992, about 2,500 will be children.


Until 1960, childhood leukemia was fatal, with only rare exceptions. Patients usually survived only three to six months. Since then, dramatic medical progress has changed that. The news about leukemia treatment, recovery, and survival rates is encouraging.

What Is Leukemia?

Leukemia is not a single disease but several, involving the body’s blood-forming tissues–the spleen, lymphatic system, and bone marrow. While leukemia’s cause is still undertermined, heredity, radiation, and even viruses (though leukemia is not contagious) are among possibilities now under investigation.

Leukemia involves the unregulated (cancerous) growth of blood cells in the bone marrow. Bone marrow makes erythrocytes, the oxygen-carrying red blood cells (RBCs); thrombocytes, blood platelets that help stop bleeding after an injury; and leukocytes, the white blood cells (WBCs) that fight infections.

Immature WBCs are known as lymphoblasts, or “blasts”; they can be normal or leukemic. Any of the three types of WBCs (neutrophils, lymphocytes, and monocytes) can become cancerous, but only one type is affected in each patient.

Cancerous cells grow too fast to mature and perform their normal functions. Leukemic blasts keep forming, crowding out RBCs or normal WBCs.

What Are the Symptoms?

People with leukemia can have a variety of symptoms including anemia (a low number of RBCs, causing a lack of oxygen to the cells), fatigue, stomach or joint pain, headache, fever, bleeding problems, unusual bruising, and frequent infections. Sometimes leukemic blasts overflow from the marrow into the blood, enter other organs (the spleen, liver, etc.), and grow there. These organs then become enlarged.

“The whole situation really frightened me,” Julie said. “Questions kept coming to my mind. Like, what will I be able to do? How will I walk again? Will I be able to run? What is chemotherapy? What do the drugs do? How long will I be sick?”

Types and Treatment

Leukemia can be acute or chronic. The acute form appears suddenly and without treatment progresses rapidly. Almost all childhood leukemias are acute. The chronic form allows the production of some normal cells and progresses more slowly.

Acute lymphocytic leukemia (ALL) is the most common form (90 percent) in children. Most children are diagnosed between the ages of 2 and 8.

Acute myelogenous leukemia (AML) is more common in persons over age 25 but sometimes occurs in teenagers and children.


Because symptoms in the early stages of leukemia may mimic other diseases, a physical examination, blood tests, and tests of the spinal fluid and bone marrow must be done to diagnose leukemia.

Treating leukemia begins with chemotherapy — the use of one or more drugs to kill the leukemic cells. This allows the normal blood cells to start growing again. When this happens, the disease is said to be in remission.

Next, doctors use another drug or radiation (X-ray) therapy to kill any leukemic cells that may still be alive. This can help avoid a recurrence of the disease, known as a relapse.

Dealing with the Side Effects

Patients also have to deal with the side effects caused by the treatments.

“Losing your hair is a weird feeling… younger kids like to go without any scarf or wig,” Julie said. “The junior high girls like to wear a wig…I wore a scarf…as active as I am…just put on a scarf and go.”

Remko, another patient, said: “I was bald for a summer and almost all through the ninth grade, but I wore a hat during school. A few people teased me. It didn’t bother me. I knew my hair would grow back.”

“Getting sick [nausea and vomiting] was terrible,” said Kelly, age 17. “Everybody’s different and has different reactions to the drugs.”

Most of the unpleasant side effects from the various treatments are temporary and disappear when the treatments are over.

As Julie says, “The side effects only last awhile; the life you live lasts a lot longer.”

You may have heard news stories asking people to be tested to see if their bone marrow is compatible with that of a leukemia patient. Transplanting bone marrow from a family member into a patient is another treatment sometimes used in ALL and AML. When it is used, this procedure usually follows chemical and radiation therapy. The new marrow begins producing normal cells.

There is still much more work to be done. But today, says the Leukemia Society, more than 70 percent of the children with ALL survive and are free from leukemia. Chemotherapy continues for about three years, and no further treatment is required. These leukemia-free patients are considered cured.

While the cure rate for AML is lower (20 to 30 percent), it is improving as new treatments are discovered.

The Will to Survive

The survivors of childhood leukemia show a wonderfully positive attitude and a strong determination to win. The will to survive counts!

“I lived with all this special treatment for two years…I didn’t give up…the other day I received a letter saying there was no more sign of tumor. So don’t give up. I didn’t, and look what happened to me!”–Betsy, age 19.

Massive research efforts continue, offering good reason to feel optimistic that survival rates will continue to increase until leukemia at last becomes a completely curable disease.

>>> Click here: Mortal flesh

Gene Gun Could Treat Hair Loss

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IN a promising step in studies of hair growth, researchers at a biotechnology company in California have found a way to fire genetic “bullets” at hair follicles, the tiny hair-making factories in the skin.

“We think this delivery system opens the whole hair-loss field to the possibility of gene therapy,” said Dr. Robert M. Hoffman, the founder and president of Anticancer Inc., a biotechnology company in San Diego. He and the company’s senior scientist, Dr. Lingna Li, reported their findings in the July issue of the journal Nature Medicine.

But another expert in the field cautioned that the results in laboratory experiments might not carry over to human tissue.

The researchers encased marker genes in liposomes — microscopic man-made spheres of fatty material. Three days after spreading the liposomes on the skin of shaved laboratory mice, the researchers found that the genes had been deposited in the cells of the hair follicles.


“We have an enemy, hair follicle disease, and Dr. Hoffman has invented a gun with which to fight that enemy,” said Dr. Leonid B. Margolis, an expert on liposomes who is a visiting researcher at the National Institutes of Health in Bethesda, Md. “He has demonstrated that the gun works by firing blanks at the hair follicles. What remains for us to do is to develop the ammunition that will make the gun useful in the fight against hair loss.”

Dr. Hoffman said that the liposome delivery system grew out of unrelated research on cancer cells that were being grown on sponge-gel matrices in his laboratory (Actually, liposomes work on human skin as the best fuel injector cleaner that clean dirty the fuel capacity). “We asked ourselves whether we could grow normal human skin on these gel matrices,” Dr. Hoffman said, “and when we tried we found that the skin growing in culture produced hair. This was a big breakthrough.”

The ability to grow hair-bearing skin in the lab provided the researchers with a means for screening “molecules that could modify hair growth,” he said.

“Almost as an aside, we asked what happens if you put liposomes on the skin cells,” he said. “So we put a fluorescent dye inside liposomes and applied them. To our great surprise we found that the liposomes were selectively delivering their cargoes to the hair follicles, almost to the exclusion of all the other cells in the skin.”

The researchers then found that they could use liposomes to deposit melanin, a pigment that occurs naturally in animal tissue, inside follicles and “color hair from the roots up.” The next step was to test whether the liposome delivery system could be used for gene therapy.

First in laboratory tissue cultures and then in shaved mice, the researchers demonstrated that liposomes containing the so-called lacZ gene deposited the gene in the hair follicles near the base of the hair shaft. Without a liposome jacket, lacZ genes applied to skin tissue did not appear in the follicles.

The lacZ gene was chosen because it produces galactosidase, an enzyme that is easy to detect in tissue because it turns blue when treated with the proper chemicals.

Dr. Gerald G. Krueger, a dermatologist at the University of Utah Health Sciences Center in Salt Lake City, said his research team has performed similar experiments “and we’ve been pleasantly surprised at what can be done with liposomes via the hair follicle.”


But Dr. Krueger cautioned that extensive research has shown that mouse skin tissue appears to absorb chemicals more readily than does human tissue, so what works for one may not work for the other.

Products based on liposomes could be in use within 10 years, Dr. Hoffman predicted. The first products would most likely be used to restore color to gray hair by delivering pigments to the hair follicles.

He and Dr. Li are studying the tyrosinase gene, which plays a role in making melanin, to see whether it can be used to reactivate pigment production in the follicles of people with gray hair. He said his lab is also making progress using liposomes containing drugs to prevent hair loss caused by cancer chemotherapy.

Liposome-based gene and drug therapies for the 80 million American men and women who have hereditary alopecia, the most common kind of baldness, will probably take more time to develop, partly because scientists do not understand what makes hair follicles tick.

Mortal flesh

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My mother went under the knife last summer, sacrificing her left breast to the unkind god of cancer. The uncontrolled dividing by abnormal cells, which raised a tightened, angry welt on her breast that her doctor had recommended watching for over a year, turned out to be an aggressive tumor. After the mastectomy and the removal of lymph nodes, which fortunately were cancer-free, her oncologist recommended intense chemotherapy. Otherwise, he said, this cancer would definitely be back.

My mother decided to heed his advice. She also reached the age of 72 this summer, the age of her own mother at her death. I know the coincidence haunts my mother. She finds herself eye-to-eye with her own mortality, fighting the urge to blink. I think she is afraid.

As am I. I am afraid to be motherless, afraid to assume the role of matriarch, afraid to be next. I have too often sat in judgment on my mother, with a degree of self-righteousness that now fills me with guilt and regret–especially now that I have adult children, and it is my turn to need a good defense lawyer. With panic in my heart, I would like to go back to being a child, green and unripe, hoping to age. And yet I am gripped, as we all are, by the process of becoming, by the near certainty of turning into someone I do not yet recognize. I will look into a mirror and see someone’s grandmother. I will face my own mortality more closely. I will sleep with an old man.


A phrase struck me recently as I was lurching through a Spanish translation of a prayer. It still has me thinking: carne mortal. When I first read it, my college-Spanish mind translated it as “mortal meat.” Although the more correct translation is “mortal flesh,” I like the first one better. Perhaps it is the vegetarian in me that responds to equating vitality with what is “meaty,” real and firm and edible. Our bodies are but mortal meat, slowly eaten up by life on earth. When our flesh is fully consumed, only the immortal, the soul, remains.

After only one chemotherapy session, my mother began to go bald. Her hair fell out rapidly, strand by loosened strand. Fortunately, through years of dedication to the best hair possible, my mother has made a good friend in her stylist. Not only did he take her wig-shopping and cut and style the wig, he clipped the remainder of her disappearing hair to a shiny smoothness. He did this in the privacy of her home, to spare her the humiliation of a public shearing. Then he would not accept any payment. He is a lovely man.

My mother’s cancer has brought out the best in friends and family. They have blessed her in a hundred small ways, from cards to flowers to errands. It has brought out the caregiver in my father. “Let your father make you a sandwich,” my mother urged me on a recent visit. “I’m not hungry at all, and he’s offering me soup every five minutes.”

My mother showed me her bald head. “I look like a cross between Uncle Fester and Bruce Willis,” she said ruefully as she pulled the scarf from her head. While I was glad she had not lost her sense of humor, I was not ready to see my mother bald. I was amazed, while looking at her pink head, at how much the missing halo of salt-and-pepper hair had defined her face. She looked unfinished in her shorn state and, worse, defenseless. It was scary. We come into the world bald and helpless; now I pray this is not how she exits. I told her that maybe her hair will grow back in curly and red, the way she always wanted it to be.

I should be used to bald heads. My husband has very little hair, but his baldness has been natural and gradual. He wears it well. I find his lack of a hairline sexy in a smoldering-intellectual way. But the sight of a bald woman, especially a woman who is not in a punk band but is your mother, is jarring. My mother maintains that the hair loss has been her hardest hurdle.


Going bald has disheartened her more than the needle stickings and blood testings and wound drainings and phantom pains and the dozen other indignities associated with her illness and treatment. It seems that she weathers the big storms and stresses over the scattered sprinkles. Her hair will grow back; her breast will not. I pray that the cancer also does not.

I tell my mother that losing her hair is but a side effect, a temporary inconvenience, no big deal. I say her head is nicely shaped, that her scarves and hats are fetching, that her wig is completely convincing. But I am realizing that it is a huge deal: that maybe to her, her lost hair foreshadows her life as fleeting, shrinking, falling away. Maybe as the months pass, it feels final. There is an erasability to aging that is somehow unfair and too soon in coming, even though we know it surely is neither.

The prayer utterance “Thy will be done” sticks in my throat these days. It is an easier prayer to embrace when the road ahead seems to stretch endlessly, when the smell of mortal meat does not waft on the breeze. I pray that my mother will live to see a beehive of great-grandchildren and the dawning of more decades. But God’s will is around each bend of the road we travel, and we had best be on our way.

Valerie Schultz, who lives in Tehachapi, Calif., is an occasional contributor to America.

Exercise excess: you can have too much of a good thing

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Is a teen, MaryBeth Moore of West Palm Beach, Fla., didn’t spend her free time at cheerleading practice, gossiping on the phone, or working at the local grocery store. Instead, she exercised. “My routine consisted of a 6-mile run in the morning, a 6-mile run in the evening, and an hour and a half of high-impact aerobics or a personal training session,” Moore says.

That sounds like a lot, but Moore didn’t think she was doing anything unhealthy. “I just wanted to be the best on my track team and get a scholarship for college,” she explains. Like Moore, you may think more exercise is always better. But too much exercise can actually be harmful or even deadly. Here’s what you need to know about exercise in overdrive.

What Is Exercise Abuse?

“Exercise abuse [also called exercise addiction or excessive exercise] is a compulsion to exercise, where you feet you can’t stop,” says Kenneth Littlefield, a psychologist at the Arizona-based Remuda Ranch, a treatment facility for people who have eating disorders. “The part where it becomes an addiction is where you need increasing amounts to feel satisfied. When enough isn’t enough.”


Little research has been done, but experts estimate percent of people in the United States abuse exercise. And it’s definitely a growing phenomenon, Littlefield says. Wonder why? Flip on your local TV news and you’ll most likely hear about the obesity epidemic. Couple that with wanting to fit in and seeing celebrities who are unbearably thin or impossibly ripped, yet who are considered the perfect size, and it’s easy to see how normal exercise can cross the line to abuse.

Many people think it’s better to over-exercise than to be overweight or have an eating disorder such as anorexia or bulimia. But exercise itself can be part of an eating disorder. It can be a form of purging if the exercise is done excessively in hopes of burning off all calories eaten. “Usually, if there’s an unhealthy relationship with exercise, chances are there are also some eating disorder symptoms such as restricting, hinging, and purging,” says Kelly Pedrotty, exercise coordinator at the Renfrew Center of Philadelphia, an eating disorder treatment center.

Exercise Overload

Too much exercise can be as unhealthy as an eating disorder. Extreme workouts can cause fatigue, hair loss, fainting spells, loss of menstrual periods, dehydration, malnutrition, and overuse injuries such as fractures. “People who exercise excessively typically perform the same activities over and over,” says Dr. C. David Geier, director of sports medicine at the Medical University of South Carolina. “Overuse injuries occur when an area of the body is exposed to excessive stress over a period of time without sufficient rest and time to repair.” Excessive exercise can cause hormonal changes that weaken bones. Combined with extreme physical strain, this can lead to stress fractures.

An even worse outcome is heart complications or death. When someone exercises too much and doesn’t replenish enough calories, the body starts to break down fat for energy. When there’s no more fat, the body breaks down muscle for fuel. Because the heart is the biggest muscle in the body, it’s hit the hardest. Athletes who get enough calories and nutrition have very healthy hearts, but those who don’t compensate for the demands they place on their bodies can experience heart failure or a heart attack.

Excessive exercise also affects self-image and relationships. “People who overexercise usually have a distorted perception of their appearance,” says Theresa Fassihi, a psychologist at the eating disorders program at the Menninger Clinic, a psychiatric clinic in Houston. “They see themselves as out of shape and may become self-conscious and avoid social contact, or they may be so involved in their exercise that they don’t have time for social activity.”

Jason Thomas, 18, of Houston, is a prime example. Two years ago, he started lifting weights to beef up. “I started off lifting 80 pounds, and then when I saw the muscles piling on, I started lifting more and more,” he says. Eventually, Thomas was benching more than 200 pounds and was at the gym multiple times a day. “When my girlfriend complained [I was] not spending enough time with her, I felt she was making me choose between her and exercise,” he says. “Exercise won.”

Not So Easy to Spot

Although female models and actors get the most notice for being too thin and battling eating disorders, exercise abuse isn’t a female-only problem. As Thomas’s story proves, it affects both sexes. And any type of exercise can become an addiction, from strength training with weights to cardiovascular exercises such as biking.

It’s not always easy for someone to recognize that he or she is exercising too much. Frequently, a friend or family member has to point it out. And those around the compulsive exerciser may not realize there’s a problem. “Sometimes people who overexercise can be seen as very high functioning, and they can get a lot of praise and admiration for what they’re doing,” says Fassihi. That feedback reinforces the person’s belief that his or her habits are healthy.


Slowing Things Down

Eventually Thomas’s mom questioned his constant weight lifting. When he kept working out despite a fractured elbow, Thomas saw his mom and girlfriend were right. Still, he couldn’t quit.

“I told myself I wouldn’t go to the gym at all for at least a week, but I got really angry and depressed,” he says. At home, however, Thomas did the same workouts he would have done at the gym. “I just couldn’t stop myself.”

Most people don’t seek treatment for exercise abuse, but it can be hard to stop without help. “The best treatment is similar to what works for treating eating disorders–behavioral therapy and medication,” says Fassihi. Behavioral therapy helps adjust thought patterns, and medicine treats side effects such as osteoporosis or underlying issues such as depression.

For nearly a year, Thomas saw a therapist who specialized in eating and exercise disorders and was able to streamline his workouts. “I no longer feel the need to be a gym rat,” he says. “I go a few times a week, work out for 45 minutes, and then get on with other things in my life.”

Moore kicked her habit too. Two weeks after being recruited by a university, “I gave up a college running career because I was so burnt-out,” she says. But she has no regrets: “Giving up my track scholarship was a life lesson. I started working with a trainer and found interest in other exercise routines and actually started to look healthier.” Now, at age 24, she works out once a day and never for more than an hour. “You can’t base your whole life on exercise,” Moore says. “You have to have fun with it and make it a hobby, not a bad habit.”

Are You in Trouble?

Worried that you may have a problem? Wondering how much is too much? “It can’t really be broken down to ‘if you’re exercising so many hours, you’re overexercising,'” Theresa Fassihi, a psychologist at the eating disorders program at the Menninger Clinic in Houston, says. “It’s more about attitude.”

For people with normal exercise habits, working out can be a way to maintain a healthy weight or improve overall health, or it can simply be something they enjoy. For excessive exercisers, though, working out becomes the first priority. They also tend to have intense feelings, such as “I’ve got to do it” and “I can’t miss my workout;’ Fassihi explains.

Even though there are no hard-and-fast rules, here are some questions and red flags that can help you determine whether you’re exercising excessively.

Ask yourself:

1. Do I exercise because I enjoy it or because I feel I have to?

2. Do I work out when I’m injured or ill?

3. Do other people express concern about how much I exercise?

4. Do I take days off to rest?

5. Do I blow off friends, family, schoolwork, or other commitments to work out?

Look for these red flags:

[check] constant thoughts or conversation about exercise exhaustion

[check] constant soreness, stiffness, or pain

[check] missed menstrual periods

[check] depression or irritability from missing a workout

[check] neglect of other commitments

[check] need to work out despite illness or injury

[check] need to hide exercising from family and friends

Before Reading

* Have students state whether they believe exercise is always healthy.


* What health problems can exercise addiction cause? (fatigue, hair loss, fainting spells, loss of menstrual periods, dehydration, malnutrition, overuse injuries, bone weakening, stress fractures, heart complications and death, poor self-image, and relationship problems)

* What are the signs of overexercising? (People may center their lives around exercise; get upset when they miss a workout; exercise through exhaustion, pain, or illness; and neglect commitments and other people.)


* Understanding Exercise Addiction: A Teen Eating Disorder Prevention Book, by Marlys Johnson (Rosen Publishing Group, 1999)

A hair-raising puzzle: electrical treatment may help reverse balding

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A hair-raising puzzle Electrical treatment may help reverse balding

Floyd Wandler’s father was completely bald at 27, and his own hair started falling out when he was 25. Because baldness is a hereditary trait, Wandler, now a 40-year-old Vancouver businessman, says that he realized he would likely lose all his hair. But, two years ago, a friend told him about a new process undergoing tests in his home city. Wandler says that he was skeptical because he had spent years trying a variety of treatments. Still, he contacted Current Technology Corp. and volunteered to participate in the company’s program. After six weekly sessions, Wandler claims that his hair loss slowed. After 12 weeks, his hair stopped falling out. Now, two years into the program, his hair has filled in on the sides of his head, and he no longer has bald spots at the back. Said Wandler: “I’m really excited about it. It’s great. It’s remarkable.”

The apparent results of Current Technology’s treatment are as remarkable as they are mysterious. Wandler and 55 other male volunteers who took part in a double-blind clinical trial at the University of British Columbia, completed last year, sat under a device resembling a salon hair drier. For 12 minutes, once a week, 30 of the men received measured amounts of electrical impulses, 100,000 times below dangerous levels, according to the company. The remaining 26 men received a placebo. After 36 weekly treatments, which are completely painless, the men involved in the UBC trial had an average 66-per-cent increase in the number of hairs on their heads, and all but one of the 30 receiving the treatment stopped losing hair or showed regrowth.

But the reasons for the success have eluded researchers. Wrote Dr. Stuart Maddin, clinical professor of dermatology at UBC, who conducted the trial: “The rationale of this phenomenon is unclear.” Like many observers, Dr. William Danby, secretary-treasurer of the Kingston, Ont.-based Canadian Dermatology Association, has adopted a wait-and-see approach. Said Danby: “As with any scientific work, it’s customary to await independent confirmation of the results.”

Since the mid-1970s, doctors and therapists have used low-level electrical stimulation to speed the healing of bone fractures and such soft-tissue damage as ulcers. According to Current Technology’s president and chief executive officer, Anne Kramer, its hair-raising effect was discovered by an American acupuncturist in the mid-1980s while treating patients with electrode stimulation. At the time, Kramer and her husband, Robert, Current Technology’s chief financial officer, were raising venture capital for mining companies. But, said Anne Kramer, “we were looking for a product and an industry to work in that we felt would survive the downs in the economy as well as respond to the ups.”

The Kramers met with an acupuncturist, whom she declines to identify, saying only that “he has not been involved with the company for a long, long time.” The couple formed Current Technology in 1987, listed it on the Vancouver Stock Exchange and, for an amount the Kramers will not divulge, bought the rights to the acupuncturist’s process. From a low this year of 94 cents in January, the stock traded as high as $7 7/8 this summer, but it swooned last week in the heat of the crisis in the Middle East and closed on Friday at $4.90. Still, the potential market for the treatment, if it fulfils its initial promise, seems solid. Balding, a largely male trait, affects between 20 and 25 per cent of all men by age 40–approximately 22 million North Americans.

Although experts say that they do not know why pulsed electrical stimulation would promote hair growth, Maddin posited his theory in his report of the UBC study published this summer in Philadelphia’s International Journal of Dermatology. According to Maddin, who is on Current Technology’s medical advisory board and who bought 2,000 shares in the firm, the electrical pulses may cause increased division of dormant hair follicles and of skin cells on the scalp.

Having met the safety and efficacy criteria of the medical devices regulations of the federal Food and Drug Act, Current Technology is now working towards satisfying the U.S. Food and Drug Administration’s criteria and initiating its marketing strategy. According to Anne Kramer, the first chair-and-head device should be ready by December. The firm plans to enter into joint-venture agreements with dermatologists in Canada and the United States who would lease the devices and administer the treatments in their clinics at $50 per session, or $2,500 per year.

Still, despite early reports of success, many dermatologists are cautious. Dr. Neil Shear, for one, at Sunnybrook Hospital in Toronto, says that he would like to see more information before he decides whether to put a machine in his office. “Hair loss is not a trivial problem,” said Shear. “It would be a real boon if this worked. But we’ll see what happens.” With so few other options available, there will likely be many bald people eagerly watching for any new developments.

PHOTO : Wandler: after 36 weeks of electrical impulses, phenomenal results

PHOTO : Kramer: surviving economic downs

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Coping with hair loss

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Louise Haineault said that the disease began with a small bald spot on her head. Then, her thick auburn hair began to fall out in patches. Within 11 months, recalled the 29-year-old Montreal secretary, she was completely bald. Haineault had also lost her eyelashes, eyebrows and, indeed, all her body hair to the unpredictable and so far incurable disease called alopecia areata, which causes sudden hair loss. Like most people who suffer from alopecia areata, Haineault, whose affliction began when she was 18, lost more than hair. She says she also lost her self-esteem. “You feel ashamed if you don’t have hair,” said Haineault. But now she and thousands of other alopecia areata victims are attempting to cope with their hair loss in new ways. She added that, last year, she joined the Montreal-based Quebec Alopecia Areata Foundation, one of several new self-help groups for people with the disease. “I thought I was alone,” said Haineault. “Now, I know that anybody can get alopecia at any time.”

According to the San Rafael, Calif.-based National Alopecia Areata Foundation, an estimated two million Americans and about 200,000 Canadians, including men, women and children, suffer from the disease. Alopecia areata is not life-threatening, and people who have it are otherwise healthy. But experts say that the change in a victim’s appearance can be psychologically devastating. Some people afflicted by the disease become so distraught that they attempt suicide. “They totally lose their identity,” said Dr. Maria Rozenfeld, a Montreal dermatologist who treats patients suffering from hair loss.


Now, increasing numbers of victims are turning to support groups to ease the emotional pain and to bring the once-taboo affliction out of the closet. Psychologists say that most people with alopecia areata want to be accepted as they are-as normal people who happen to be missing their hair. “That is why support groups are gaining momentum,” said Tiera Clark, executive director of the Edmonton-based Canadian Alopecia Areata Association. “They are places where people understand.”

During the past five years, self-help groups for alopecia areata victims have been formed in Edmonton, Saskatoon, London, Ont., Toronto, Kingston, Ont., Montreal and Halifax. In the United States, the National Alopecia Areata Foundation sponsors 65 support groups. Besides treating psychological wounds, support-group meetings provide an opportunity for victims to exchange practical information about new treatments, wigs and cosmetics. Members also say that sharing their experiences helps to reduce their sense of isolation. Said Clark: “You can’t imagine the joy I felt when I first met another person with alopecia. ”

Doctors say that they do not know what triggers alopecia areata. Until recently, most physicians blamed it on stress. But Dr. Sigfrid Muller, chief dermatologist at the Mayo Clinic in Rochester, Minn., said that studies conducted there show that “stress has nothing to do with it.” Now, Muller and most medical researchers say that, in alopecia areata, the immune system, for reasons they do not understand, mistakenly attacks healthy hair follicles and suppresses their growth.

Alopecia areata begins with one or two bald patches. In 80 per cent of cases, patients’ hair grows back within a few months. But, in the remaining 20 per cent, the disease progresses to more advanced stages. Some victims lose aN their scalp hair, eyelashes and eyebrows. Others lose their body hair as well.

Clinicians try to stimulate new hair growth with an ever-increasing arsenal of medications. Treatments include cortisone injections and monoxidil, a drug originally designed to treat high blood pressure. But doctors say some of these treatments are expensive, sometimes painful and may carry the risk of severe side effects. They add that the treatments work for fewer than 50 per cent of patients and that, even then, results are temporary. Said Muller: “New hair often falls out again when the medication is discontinued.”


Faced by irreversible hair loss, many patients try to camouflage their baldness with wigs. “I tried a lot of different treatments and I have given up on them,” said Karen Kurtz, a 26-year-old Saskatoon insurance adjuster who wears a hairpiece to cover baldness caused by alopecia areata. Still, wearing a wig can take a psychological toll, according to Wendy Thompson, a 44-year-old Vancouver gerontologist who wore a hairpiece for seven years to conceal the effects of alopecia areata. Said Thompson: “Aside from the fact that wigs are uncomfortable and fall off, masking everything for the world is emotionally draining.”

At the same time, alopecia areata victims say that, outside support groups, they face a largely uninformed and image-conscious society. “People do not accept somebody without hair,” said Margaret Chisamore, a 47-year-old Montreal warehouse clerk who suffers from alopecia areata. Gary Wagner, a 23-year-old Montreal university student, said that the disease prevents him from functioning normally. “I build up fears about going out in public,” said Wagner. Others, like Saskatoon’s Kurtz, say that the disease can ruin relationships because people mistakenly believe that it is contagious or hereditary.

Kurtz and other victims say that it may take years to change society’s reactions to their affliction. Meanwhile, they are striving to change their own attitudes. Haineault said that, as a result of the confidence she has gained from her support group, she no longer cares what people think about her baldness. “With or without hair,” she said, “I feel good about myself.” Until scientists find a cure for alopecia areata, that may be the most effective relief from a disfiguring malady.

>>> View more: Gene Gun Could Treat Hair Loss

In competition for your nose

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THERE are dozens of glass bottles on the new bar at the Naturopathica day spa in East Hampton, N.Y., each with the name of an essential oil — tea tree, tobacco, vetivert, ylang-ylang, to name just a few — and each stamped with the date that the plant’s essence was distilled.

”We have vintages, like a fine wine,” said Barbara Close, the owner of Naturopathica, one of the more luxurious spas of the Hamptons.

Yes — at last — there is a full-fledged aromatherapy bar for the lobster-salad-at-the-Devon-Yacht-Club set.

Custom-blend aromatherapy bars are a rarity. Many stores sell small bottles of essential oils, either by plant — say, a half-ounce bottle of tea tree, lavender or bergamot — or in popular blends that purport to have therapeutic qualities. Only at a handful of stores can customers walk in, consult an aromatherapist, inhale samples of oils and order a melange of their favorites.


”The purpose is to come in and have fun,” said Ms. Close, who presides over the store with her wire-haired dachshund, Pearl.

Now, if customers come in for a massage or a facial, they can also buy a custom-scented body lotion to take home. ”You can let your therapist know if perhaps you’ve had allergies or a sinus congestion, or you twisted your ankle on the tennis court,” Ms. Close said. ”They can make a one-ounce dry-skin oil, or a muscle-relief oil or a decongestant.”

Lovely and sweet-smelling, yes; scientifically proven, no. Although fragrances are used in all sorts of feel-good ways — in hospital rooms for cancer patients, in Japanese office buildings to pep up workers — the efficacy is largely anecdotal. And let’s face it: even in the annals of so-called wellness practices, aromatherapy can sound a bit like a punch line. ”It sounds sort of frou-frou,” Ms. Close admitted. ”We should change the name of it, first off.”

The claims run the gamut. Aromatherapists say that essential oils from flowers and trees can ease muscle cramps, improve short-term memory, prevent hair loss and reduce the itch of eczema (scratch and sniff?). According to recipes in common circulation, a blend of lavender and neroli oils can help calm a cat stressed out by a new baby, or a dog wary of a thunderstorm. Another telltale sign: Madonna is said to be a big fan of the practice.

But an aromatherapy bar is basically a pampering experience, part head therapy and part aural pleasure. These bars exist primarily in resort areas, where they nurture the rich, or in bohemian enclaves, where they have vaguely Wiccan overtones. In Manhattan, there is one on East Seventh Street called Fragrance Shop New York, better known by the neon sign in front that says ”Sniff.” Its vibe is far more East Village than Hamptons, with hand-labeled jars of fragrance that customers can pass directly under their noses.

Come September, the Fresh body-care stores will introduce fragrance bars where customers can fill miniature bottles with perfumes that the brand has formally ”retired,” like Tobacco Caramel and Pear Cassis.

In the West Village, there is Enfleurage, where customers can buy premixed oil blends or select their own from a display of samples.

”We don’t make perfume, we blend for therapy,” said Trygve Harris, the owner. ”We have a headache helper, a blend for sleep, one for comfort if you’re feeling stressed and you need to withdraw.”

That said, she and other aromatherapists were quick to note that Food and Drug Administration rules forbid their making medicinal claims. ”We can’t say ‘This is good for that,’ ” said Ms. Harris in a phone interview shortly before a trip to Oman, where she distills frankincense. ”We have to say, ‘This has been shown to …’ or ‘Some people use this for …’ ”

Because it takes a lot of flowers to make a single drop of oil, high-end aromatherapy products are pricey. This is one reason that custom-blend bars are few and far between.

”It’s very, very expensive to have an aromatherapy bar and keep it stocked,” said Kelly Holland Azzaro, president of the Natural Association for Holistic Aromatherapy. ”You have to know what you’re doing in blending, which ones you’re doing for what reasons. Somebody could get it in their eye, too.”

Although essential oils do not contain the same allergens that make some people sensitive to perfume, many of them are not safe to use directly on the skin. ”You want to be careful with all of them, because they’re so potent,” said Ms. Azzaro, who owns a holistic healing center in Banner Elk, N.C. When she makes custom oil blends for customers, she takes a full health history first.

One of the oldest aromatherapy bars is on Nantucket. There, John Harding is the proprietor of an 18-foot-long bar with four bar stools that face 1,500 antique apothecary jars filled with essential oils.

”I have 18 musk oils — most stores might have two or three,” said Mr. Harding, who started Nantucket Natural Oils in 1983 and now has two locations. ”I have eight sandalwoods and six patchoulis to choose from. People can come sit at the bar and see which jasmine they like.”


First, Mr. Harding and his staff members use fine glass pipettes to dab a dot of oil on a customer’s hand; the customer samples that fragrance and moves on. Five to 10 dots later — or more — the customer selects a blend that will be made into a quarter-ounce bottle of scent that typically costs $85 to $120.

Part of the appeal is ”that personal touch,” said Jennifer Hochell Pressimone, an aromatherapist in Clermont, Fla., who runs a shop called JennScents and has written a three-DVD guide to opening an aromatherapy blending bar.

Many of her customers are harried women for whom it is a great relief to sit down, doff a heavy purse and let a caring helper guide them through the experience of sampling aromas. ”I make them turn their phone off or put it on silent, because it’s their time — whether it’s 5 minutes or 10 minutes, they can just breathe and smell some oils,” she said.

Essential oils are easy to find in big stores like Whole Foods, and people can blend them without the help of an expert. One of the biggest retail brands is Aura Cacia, whose executives are quick to recommend ways to use their oils in everyday life: spray peppermint oil around the house to ward off mice, or tap it into a pair of shoes to keep them fresh. Add eucalyptus oil to cleaning liquids for fragrance and as a disinfectant; drop lavender oil on pillows to aid sleep.

”People are really looking for a solution,” said Jane Merten, senior brand manager at Aura Cacia, who said she uses peppermint oil as an alternative to Dramamine. ”They are no longer looking for just a soap or a shampoo. Essential oils take things one step further.”

Ms. Close of Naturopathica also has a theory about what customers want. Besides being an herbalist and massage therapist, she is a realist.

”I think people are looking for attainable well-being,” she said. ”The kids are getting off the bus in 20 minutes — what can I do to relieve my stress? As opposed to what the media portrays: the model sitting on a mountaintop in a yoga pose.”


PHOTOS: PAMPERING: Barbara Close, the owner of Naturopathica in East Hampton. Essential oils at the spa’s aromatherapy bar, above. (PHOTOGRAPHS BY GORDON M. GRANT FOR THE NEW YORK TIMES)

40 million U.S. men deal with baldness: Some proud of their `chrome domes’

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Baldness cures get good press. And no wonder. There’s a built-in audience of about 40 million scant-haired Americans who thrive on both the good news and the bad. Hair loss has become a culture unto itself.

Earlier this week, the Food and Drug Administration approved Propecia, a new one-a-day anti-baldness pill that does indeed shrink those pesky bald spots. For $1.50 a pill.

“This is real hair. This is not fuzz,” chirped one California dermatologist.

“Impressive,” said another doctor, who tested the drug on his patients.

“Forget it,” said John Capps, founder of the 20,000-member Bald Headed Men of America organization. “People have been looking for a baldness cure since biblical times. But why worry about hair? We’ve lost it, and we love it.”

The 25-year-old group also promotes National Rub a Bald Head Week, a newsletter called Chrome Dome, a bald hall of fame and bald pride.


“The few, the proud, the bald,” Mr. Capps added.

The folks at Merck & Co., which manufactures Propecia, think otherwise. They are already crafting a marketing campaign that will reassure potential users concerned about possible side effects such as impotence or loss of sex drive. Annual sales of Propecia are predicted to be around $500 million. The drug goes on sale in mid-January.

Meanwhile, the bane of baldness continues to challenge.

There are the doctors, who deal with hair loss like an illness, mapping out symptoms with empirical care. Things have been very active in the past few years.

The London-based Institute of Trichilogosts, for instance, determined last year that heavy drinking can prevent hair loss because it blocks the absorption of testosterone in the liver. Testosterone is thought to cause baldness.

“How many alcoholics are ever bald?” the English researchers asked. Doctors in India, in a separate study, agreed.

French doctors, on the other hand, recently theorized that baldness is caused by a scalp infection and should be treated with antibiotics. The National Academy of Sciences casts the blame on estrogen, which causes hair “to rest” rather than grow – at least in mice. The Journal of Andrology, however, linked baldness with high testosterone levels.

It’s the genes, said researchers in Oregon. No, it’s a thickened galea (scalp), said another set of thinkers who believe the blood vessels can’t nourish the hair follicles. Other researchers have recently linked baldness with coronary disease and prostate cancer, among other things.

A new double-strength Rogaine solution is in the works for folks who favor a rub-on cure. Those who want to sew one on are also in luck. According to the American Academy of Cosmetic Surgery, about 330,000 men got hair transplants last year, accounting for a third of all cosmetic-surgery procedures.

Things go a little haywire after that.

For the intrepid, New York plastic surgeon Anthony Pignataro offers “prosthetic hair,” a toupee held in place by titanimum and gold snaps imbedded into a person’s skull.


There are hair weaves, hairpieces, botanical hair thickeners, scalp cleaners, follicle stimulants and even Couvre, a scalp cosmetic that comes in seven shades to mask the shine of a balding pate.

Professional hoaxer Joey Skaggs, who fooled CNN into believing he had a special computer program that could predict the outcome of the O.J. Simpson criminal trial, also took on hair loss a few years back.

Mr. Skaggs pretended to operate a company called HairToday Ltd. Their specialty? Hair transplants from cadavers. It got considerable coverage on TV and in print, right along with Mr. Skaggs’ claim that his “Celebrity Sperm Bank” had been robbed.

Is there a voice of wisdom in all this? Perhaps.

“We’re not going to lose one hair on our heads over pills or anything else,” said Mr. Capps of Bald-Headed Men of America. “Our motto is `bald is beautiful.’ That’s the best philosophy of all.”

>>> View more: Few drugs head off baldness – Dermatologists share facts about stopping hair loss

Few drugs head off baldness – Dermatologists share facts about stopping hair loss

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We’ve all seen the ads: A balding man examines his shiny head in the mirror, his mood receding as rapidly as his hairline.

Enter his trusted (and thick-haired) friend, who presents him with a “foolproof” hair-growth elixir. Several months later, the same man looks into the same mirror, this time, running his fingers though a full head of hair.

Unfortunately, say health-care professionals, that scenario is closer to science fiction than medical fact. Although several new drugs have been proved effective at preventing hair loss and growing small amounts of new hair, it’s best to steer clear of products promising the impossible.

What can you do if you’re losing your hair?

One of the best ways to prevent hair loss is to catch it soon after it begins, said dermatologist Jafar Koupaie of the Boston Dermatology and Cosmetic Surgery Center in Brookline. “Once the hair falls out, it usually takes between six months and several years for the follicle to die,” he said. “If somebody’s had hair loss for 25 years, treatment with drugs is a waste of time.”

When it comes to drug treatment two options are available. The first, minoxidil (sold under the brand name Rogaine) is available over the counter. The second, finasteride (Propecia) is available by prescription only. Both have their pluses and minuses, say dermatologists.


Rogaine, sold in 2 percent and 5 percent concentrations, is applied topically to the scalp. As the product reaches the hair root, it increases blood circulation to the follicle, Koupaie said. The end result is that hair gets more “nutrition” and is less likely to fall out.

In addition, a small percentage of users will experience some new hair growth.

Still, doctors say, the drug does have its downside. “Because it’s applied topically it’s difficult to get enough of the drug to the right areas,” said Dr. Joop M. Grevelink, a dermatologist at Massachusetts General Hospital. “The new 5 percent solution is a little better for this, but it’s still a problem.”

The stronger solution, however, might also cause skin irritation for some patients, Grevelink said.

“Another thing I don’t like about it is that patients have to use it twice a day,” he said. “It reminds you of your hair loss twice a day. I don’t think that’s a good thing.”

Those using Rogaine should also be aware that the drug takes up to six months to become effective, said Dr. Michael Pugliese of Dermatology Associates in Concord. “And even if you are successful in inducing hairs to grow artificially, you have to keep using it to maintain those hairs. When you stop, you’ll lose the new hair as well as continue losing your own hair.”

Propecia, on the market since early 1998, is the other option.

Unlike Rogaine, which stimulates hair follicles, Propecia actually inhibits the hormone that causes most male-pattern baldness. In addition, it works to stimulate new hair growth in some users.

Among the advantages of Propecia, doctors say, is that its oral, once-a-day format makes it a more user-friendly option.

Although those taking Propecia are faced with the same dilemma as Rogaine users – namely that hair loss will continue when the drug isn’t taken – Propecia users have six months to a year before the hair loss reverts to its previous pattern, Grevelink said.


Both Rogaine and Propecia are considered safe drugs, with few side effects. Rogaine is not recommended for people with low blood pressure; Propecia has been shown to cause impotence in about 2 percent of its users.

Propecia is not FDA-approved for women and should be avoided by women in child-bearing years, because it is thought to cause birth defects.

“We do give it to some post-menopausal women on a compassionate basis,” Grevelink said. “But we would not prescribe it to a woman who could become pregnant.”

Though hair loss is often a normal part of the aging process, Koupaie warns that it can also signal certain illnesses. Those with no family history of hair loss and those experiencing sudden hair loss could be suffering from disorders ranging from anemia to thyroid dysfunction.

“There is a lot of advertisement about hair loss and hair replacement, and at many of these places (that offer hair-loss treatment) there isn’t a physician available.

“It’s always a good idea to see a doctor before starting any program,” Koupaie said.

>>> Click here: RETIRING DOGS OF WAR; After deployments to the Mideast many times, two German shepherds will stay with their military handlers as pets and one is adopted by a Louisiana family

RETIRING DOGS OF WAR; After deployments to the Mideast many times, two German shepherds will stay with their military handlers as pets and one is adopted by a Louisiana family

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TAMPA — Conny has cataracts and glaucoma but a nose that knows no bounds. In Iraq, during one of five Mideast deployments, she found 175 pounds of explosives under a hut. – The 10-year-old military working dog has sniffed out improvised explosive devices, mortar shells, AK-47s and sniper rifles, making war a little less hazardous for humans. – Her next mission? – Retirement.

“I’ve got her a pink collar and everything,” said Senior Airman Brandon Denton of the 6th Security Forces Squadron, who served as Conny’s handler and will now keep her as a pet.

Three longtime military dogs – German shepherds with more than 200 combined dog years of service – retired Thursday at MacDill Air Force Base, after deployments in Afghanistan, Iraq, Kyrgyzstan, Bulgaria and Germany. In all, the dogs have served on 41 Secret Service missions, base officials report.


Jago, 10, went home with handler Brett Carson, also a senior airman at MacDill.

“He’s the first and only dog I’ve had in the military, and I decided to give him a good life after the service,” said Carson, 27.

Haris, 11, left with a retired flight surgeon and his wife, Randel and Shelli Patty, who drove from Baton Rouge, La., to adopt him.

Adoption of military working dogs, whether by police agencies, handlers or civilians, is permitted under Robby’s Law, signed by President Bill Clinton in 2000.

Many go to handlers.

Haris’ handler, Air Force Sgt. Jarvis Beauchamp, 24, got orders to Italy before Haris was put up for adoption. They’ve been together three years. “He’s taught me a lot,” Beauchamp said.

He knows how many allergies Haris has: 36, including dust mites and meat. He knows the dog takes a supplement to prevent hair loss.

Beauchamp will miss the way Haris pouts by sitting with his back turned.

Tears? “Not yet,” the sergeant said. “I’m not saying they’re not coming.”

He’s comforted knowing Haris is headed to a good home, with an open invitation to visit. This is the fourth military dog adopted by the Pattys, who take in four-legged heroes one at a time, letting their last years be in a home with a pool and a choice of four orthopedic dog beds. Haris will get 2-mile walks morning and night, Shelli Patty said.

Jago, like the others, logged thousands of patrols. He also found a 4-year-old child missing from base housing.

It was only recently that keepers realized Jago was blind in the left eye, apparently since birth.

“He has a great nose and ears,” Senior Airman Carson said.

Still, the disability was enough to end Jago’s career.

Like many of the handlers, Carson grew up with dogs.

So did Denton. Some people join the military for jets. Denton joined for dogs, he jokes.

He said his biggest challenge will be to get Conny to stop working and just be a dog.

Thursday morning, her new life began.

Scores of humans gathered for a ceremony.

Conny stood the straightest during the Star-Spangled Banner, her eyes darting around the room as the dogs and handlers faced the audience.

O’er the ramparts we watched …

Haris yawned.

And the rocket’s red glare …

A camera clicked. Conny’s head swung. Jago turned his good eye toward Haris, then back to the crowd.

There were speeches and applause. Soon, there would be dog treats shaped like cupcakes, hypoallergenic for Haris’ sake.


One by one, the dog handlers of MacDill Air Force Base marched down a center aisle.

They stopped. They paused.

They looked at three dogs.

And they saluted.

Patty Ryan can be reached at or (813) 226-3382.


PHOTO – KATHLEEN FLYNN – Times: Senior Airman Brandon Denton, a 6th Security Forces Squadron dog handler, gets face time Thursday with Conny, a 10-year-old German shepherd, before her retirement ceremony at MacDill Air Force Base. Conny worked in Afghanistan and Iraq.

PHOTO – KATHLEEN FLYNN – Times: Senior Airman Brandon Denton, left, stands with Conny, Senior Airman Brett Carson stands with Jago, middle, and Air Force Sgt. Jarvis Beauchamp stands with Harisduring a retirement ceremony for the military working dogs at MacDill Air Force Base on Thursday.

PHOTO – KATHLEEN FLYNN – Times: Jago, a 10-year-old German shepherd, is being retired because only recently handlers learned he is blind in the left eye. He is going home with handler Brett Carson, a senior airman at MacDill.