Originally from Perth, Kaye had been living in Israel for about 20 years when she realised that a small, occasional, problem was escalating.

For several years, bald patches had appeared and disappeared at the back of her head. They occurred in different places and were always small enough to be hidden.

But just over two years ago, something changed. Rather than gradually closing, a patch began expanding.

"My hair grew back in odd swirls of black and gray." Debbie Kaye

“Under the shower, my hair began falling to the floor. It was coming out in chunks and I could feel the patch getting bigger,” Kaye says. Controlling her panic, she sought help from leading specialists. A biopsy confirmed she had highly active alopecia.

The term alopecia comes from the Greek alōpekía which refers to the skin condition in foxes, known as mange. It is different to male pattern balding where hair follicles die. With alopecia follicles remain alive and ready to resume production, should they receive the correct signal.

There were no signals for Kaye and her specialists began giving her mini-cortisone injections directly into the patch. “It was like a staple gun being discharged into your scalp and was exceptionally painful,” she says.

"I was in tears. Not only did it not work, but my condition worsened. Within a week, the patch was so big, I had to order a handmade piece, an extension, that could be tied to my existing hair.


“Three days later, I went to have the piece fitted but everything the woman tied it to, fell out. With no option, I ordered a full wig.

“I hated it. It was uncomfortable, itchy, hot and although stuck to my head, I couldn’t move freely for fear of it slipping. I just came home and cried. My embarrassment ran so deep, I didn’t want to reveal myself to my partner. As soon as I got through the door, I’d take it off and put on a beret or scarf. I never sat at home uncovered.”

She told hardly anyone but at times disclosure was unavoidable. Once, at a function, a woman embraced her, placing her hand at the back of Kaye’s head.

Completely bald, she watched in quiet horror as hair came off other parts of her body.

“Oh, what’s this?" she said feeling the base of the wig. Then she drew back and began to murmur consolations. “I’m so sorry, I had no idea you had cancer."

One of the challenges, says Kaye, is that with alopecia you are otherwise in perfect health. “The suffering is all aesthetic. Compared to people having chemotherapy, you know you should be grateful.”

But she was struggling. Her specialists progressed her to high-dose steroid infusions that, on account of her high blood pressure, required three days of hospitalisation every month.

Completely bald, she watched in quiet horror as hair came off other parts of her body. The steroids were not working and were increasing her burden.


“My legs swelled, I became puffy, bloated and tired. The drugs affected my mood too. By now, my partner and I knew enough about alopecia to know steroids don’t work and he was strongly against me continuing.

“So, I stopped. I had to sign a paper saying I was stopping against doctor’s recommendations and, in theory, that was the end of it.”

The box of drugs from Turkey cost a third that of a bottle of the same quantity from Israel. Ilyan Marshak

No one knows what causes alopecia. Although it is popularly believed to be triggered by extreme stress and anxiety, there is little evidence to support this. The current view is that a combination of genetic and environmental factors probably set it off.

As an auto-immune disease, it is the result of the body’s immune system attacking its own tissues. Although more common than other auto-immune diseases such as insulin-dependent diabetes, rheumatoid arthritis and thyroiditis, little is known about alopecia.

About 2 per cent of the population have alopecia at some time of their life, but often only lightly. Kaye was among the 15 per cent of those who have it severely.

Miserable with her predicament, she started to think there had to be a better solution.

“So, I went into ClinicalTrails.gov, the largest clinical trials database in the world, and started searching for anything with a hint of promise.”


Something sparked her interest. “A drug had been used to treat a man with the skin condition psoriasis, who happened to have had alopecia from a young age. It helped his skin a bit but it restored his hair very well.”

The drug was a Janus kinase (JAK) inhibitor that works by disrupting signalling proteins to try to take some control over immune and inflammatory responses.

With renewed energy, Kaye searched online. She checked alopecia chat rooms and support groups and found mentions of the drug.

Sitting at home, without knowing that some JAK-related research was under way in other parts of the world, she decided to take the plunge.

Made by Pfizer, the drug was approved for use in rheumatoid arthritis and was not available for alopecia in Israel – but, she discovered, it could be bought over the counter in Turkey.

When her first box of Xeljanz (Tofacitinib) arrived in the mail, she took it to a pharmacologist. He said it looked promising and recommended she consult a rheumatologist.

Now on a mission, Kaye went directly to a rheumatologist who suggested she wait three months for the annual joint rheumatology-dermatology meeting at the hospital, where the matter would receive proper consideration.

She couldn’t wait. Back to the pharmacologist she went. He suggested she do a baseline blood test and he calculated a suitable daily dose for her.


Kaye took her first pill and every day that week photographed the back of her head, hoping for a sign. Nothing!

Finally, at three weeks, tiny dark dots began appearing. Then new baby hair appeared, soft and feathery.

The first signs of growth. Debbie Kaye

More drugs arrived from Turkey and, two and half months later, she walked into that joint meeting wearing a wig. The assembled doctors knew what she had been doing and were very interested.

“So is it really working,” the rheumatologist asked.

“I just pulled the wig off and she nearly fell off the chair,” Kaye says. "My dermatologist almost went with her. My hair had grown back in swirls of brown and white.

“They told me to continue and gave me approval to obtain the drug in Israel, under a special licence. But at about $US2000 ($2800) a bottle, the cost was prohibitive."

She needed one and half bottles a month and could get the drug at a third of the price in Turkey. Soon Kaye was in Istanbul, being taken to lunch by a pharmacist and establishing what promised to be a long-term commercial relationship.


He was already doing a healthy trade. Kaye still didn't realise she had tapped into the emerging alopecia zeitgeist.

Today, other Israelis are making the trip too and occasionally they help each other out, with a couple of boxes.

Kaye was last in Istanbul in February. “When my bag goes through Israeli customs, there is a moment when I catch my breath, but then, I have the scripts, the drug is not illegal and I only bring enough for a few months.”

Having had a full head of hair for more than a year, she hardly remembers the sensation of not having any and is back to regular hair management, having her legs waxed and eyebrows plucked.

But she remains vigilant about the risks to her immune system. Long-term concerns range from contracting a dangerous infection to developing cancer.

This promises to revolutionise the treatment of alopecia. — Professor Rodney Sinclair

Over the past two years, research has been trickling out about JAK and alopecia. When researchers at the Cleveland Clinic in the US looked back at patient records, they identified 13 with alopecia who had received the drug. Seven of them achieved at least 50 per cent hair regrowth.

That trickle is now a small stream. In August 2018, delegates at the American Academy of Dermatology were told JAK inhibitors will be a very important - maybe the most important - drug class in dermatology.


In Paris, a month later, University of Melbourne’s Professor of Dermatology, Rodney Sinclair, told the Congress of the European Academy of Dermatology and Venereology about an international trial that had preliminarily found two JAK inhibitors could safely and effectively treat some cases of alopecia.

This week he was in Barcelona, at the World Congress of Hair Research Societies, where more than 40 papers on JAK were being delivered.

Sinclair is the principal investigator of the next phase of international trials for Pfizer, which are now open for recruitment.

"This promises to revolutionise the treatment of alopecia," he says.

Jill Margo is an adjunct associate professor at the University of NSW, Sydney.