A Mom Struggles with Hair Loss

Thanks to the pioneering work of a Yale Medicine dermatologist, alopecia universalis is reversible.

Heartbreaking hair loss

Donna Riti had suffered from alopecia areata since childhood. Then all of her hair fell out.

Credit: Robert A. Lisak

Quick facts about alopecia
  • “Alopecia” means hair loss, including the very common male pattern baldness.
  • Alopecia areata, loss of hair on the scalp, and other less-frequent forms are autoimmune diseases.
  • While most cases of alopecia can be diagnosed based on patient history, a biopsy can confirm it.
  • Traditionally, alopecia has been treated with steroid injections and/or topical irritants.
  • Yale Medicine dermatologist Brett King, MD, PhD, has seen success treating patients with Xeljanz (Tofacitinib), an FDA-approved treatment for rheumatoid arthritis.

Sitting on the floor of her living room in suburban Westchester County, N.Y., on a winter afternoon in 2010, Donna Riti helped her 13-month-old son, Rocco, practice walking. “He’d take a couple steps, and then plop,” she says. During one attempt, he came at her fast, his chubby legs churning, and fell into her embrace, grabbing her hair on the way down. A clump of hair came out in his hand.

“I was hysterical, saying, ‘Oh my God! Oh my God! This is really bad!’” Riti says.

Riti, then 31, had been tortured by alopecia areata since childhood. At 10, she developed quarter-size bald spots on her head. In her 20s, she lost a horseshoe-shaped section of hair along her neck from ear to ear.

Then, over four months in 2010, Riti lost the hair on her head, her eyebrows and eyelashes, and even all of her body hair, too. The alopecia had come back in its most severe form: alopecia universalis. And no matter what treatment she tried, her hair would not grow back.

“It was devastating,” she says. “Here I am with my new husband and my new baby and I was like, ‘What’s wrong with me?’”

A faulty follicular message

About 2 percent of the population is affected by alopecia areata. While the world “alopecia” simply means hair loss, and encompasses male pattern baldness, alopecia areata and other less-frequent forms are actually autoimmune diseases.

“The hair follicle creates an aberrant message that calls the immune system to attack,” says Brett King, MD, PhD, an assistant professor of dermatology at Yale Medicine and medical director at Yale Dermatology-Middlebury. “The hair is shed, and as long as the immune system continues to attack the hair follicle, the hair doesn’t grow.”

Although doctors' understanding of alopecia areata has improved, many physicians continue to treat it with remedies that are not always effective. The traditional approach often starts with steroid injections, which reduce the immune response in the area. A physician might also prescribe topical irritants that create an itchy rash. The inflammation sometimes changes the immune response in the area, leading to hair regrowth.

Riti has tried both treatments, but the steroids can only be injected in small areas, and the topical irritants are “awful. It’s like having poison oak all over your head,” she says.

At Yale Medicine, Dr. King had pioneered a kinder, smarter approach.

His breakthrough came in 2014, when he encountered a 25-year-old male patient who had psoriasis (an autoimmune disease affecting the skin) and alopecia areata. Dr. King knew researchers had discovered that a class of medicines called Janus kinase inhibitors seemed to disrupt the messages that caused the immune system to attack a person’s cells. One of those medicines, Xeljanz (Tofacitinib), was newly FDA-approved for rheumatoid arthritis, and was being tested in clinical trials for the treatment of psoriasis. It had also been shown to reverse alopecia areata in mice.

Dr. King asked the patient if he wanted to try something that had not been tried: treating his psoriasis and his alopecia universalis with Xeljanz. “He thought that was a good idea, so that’s what we did,” Dr. King says. “Eight months later, he had a head of hair and eyelashes and eyebrows for the first time in years.”

The results were provocative, Dr. King says. "There was a scientific basis for understanding why this had happened,” Dr. King says. “We were able to pull the immune system away from the hair follicle, and that let the hair follicle do what it was intended to do – grow a hair.'

The news spread fast among people suffering from alopecia all their lives.

To learn more about our approach to treating alopecia areata, click here.

Beaten down by baldness

Riti had been without hair for almost five years. By coincidence, she was a hair stylist, a career she had chosen even before alopecia universalis came into her life. “I used to watch my cousin, who was also a hair stylist, make people look great,” she says. “To me, as a kid, it was magic!” So she had the skills to mask her alopecia with makeup and hairpieces. Still, she says, “I always felt like people were staring at me and trying to figure out what’s wrong with me."

Once a person who would confidently walk into a party alone, Riti began avoiding birthday celebrations and skipping weddings. She stopped going to beach and the gym, out of fear of hear baldness being revealed. “I didn’t want to do anything,” she says. “I went to work and I came home and that was it.”

Even at home, Riti kept her head covered with a wig or a scarf. Once, her young son saw her step into the shower and said: “Why does it come off? How come my hair doesn’t come off?” Says Riti: “I said: ‘Mommy has a boo-boo on her head. But we don’t talk about that to anybody.'”

Riti's parents and older brother adored her, and her husband told her she was beautiful, but Riti didn’t feel it. She spent more than $10,000 out of pocket on doctors and treatments. No one, from the experts at acclaimed medical centers in New York City to a holistic doctor in Tarrytown, N.Y., could make the first hair grow.

In early 2015, came across articles online about Dr. King’s patient. She requested an appointment, and, shortly afterward, she and her husband, Rocco, visited Dr. King at his office.

Dr. King explained the recent discoveries about alopecia, the reasons he sometimes prescribed Xeljanz, and the results he was seeing. He thought Riti might benefit from the medication.

She mulled over the decision to take the drug, which like all medications, has potential harmful side effects. Since it suppresses the immune system, it can raise the risk of infections and cancers, although these are very rare. Riti had to make a decision.

Ultimately, it was her brother who gave her the courage to say yes. “He researched it a lot for me and said, ‘Sometimes you have to take chances in life,’” she says.

On June 14, 2015, she swallowed her first dose.

Helping patients access a life-changing treatment

Riti was one of hundreds with severe alopecia areata who flocked to Yale Medicine once news broke of Dr. King’s success with Xeljanz. Some had lost hair over their entire bodies; others had glaringly large bald patches on their scalps or were missing eyebrows and eyelashes.

“I hadn’t seen half a dozen people with it in my whole career,” Dr. King says. “Now, in a year and a half, I’ve seen over 300.” Patients have traveled from Europe, India, Brazil and all over the United States.

Dr. King still treats mild cases of the disease with steroid injections or irritants, but offers Xeljanz for those with more widespread or upsetting forms. About half of the patients Dr. King has treated have responded to the medication, typically seeing hair growth after two or three months. 

Those who didn't respond often had suffered long-term hair loss for more than 10 years. Follicles die if they are fallow for too long, he says. It’s hard to predict, though. “I’ve had people who haven’t had hair for 16 years whose heads are now covered,” he says.

Dr. King has published his findings and presented them at an American Academy of Dermatology conference. “There was enormous excitement,” he says. “It is truly changing the face of this disease.”

Early-adopter doctors have asked him for details about the formula, the protocol and how to get insurers on board. Most do not want to pay for the drug for alopecia patients, because it costs about $3,000 per month.

“It is a problem for the vast majority of patients,” Dr. King says. “My staff and I have written well over 100 letters to insurance companies and made countless phone calls. We just fight and fight and fight, and we get insurance approval about 30 percent of the time.”

For those who qualify—including Riti—Pfizer, the drug’s maker, provides Xeljanz at no charge.

It’s too soon to know whether patients will be able to wean themselves from the drug eventually. “I suspect some people will achieve a remission and some people will need maintenance therapy,” says Dr. King, who is studying the issue. 

The big reveal

In October 2015, Riti noticed soft, baby-bunny-like hair sprouting from her head. “It was very fine and platinum,” she says. “Even the eyelashes were platinum.” Soon after, the strands regained their normal texture and chestnut brown pigment. They grew at the typical inch-per-month, just as thick as before, though a little bit curlier.

Once her hair reached pixie length, Riti took her wig off for her husband, who had not seen her uncovered for six years. 

Riti has regained her self-confidence, and enthusiastically accepts the kinds of invitations she used to turn down. “I don’t feel like people are staring at me and trying to figure out what’s wrong with me," she says. " I feel more at peace with myself.”

She returns to Yale Medicine every six months for follow-up visits with Dr. King.

Dr. King and the other caregivers at Yale Medicine celebrate every successful alopecia treatment. The mother of one  patient recently showed him a photo of her teenage son—now with a full head of hair—dressed up for his weekend job volunteering at a hospital. He had decided he wanted to be a doctor. “She got teary-eyed and told me, ‘He does things now that he would have never done before,’” Dr. King says.

“Think of the kids who get taunted at school,” Dr. King says. “Or have their wigs ripped off in the hallway. None of those kids would grow up and become what they might have been otherwise.”

Not without regaining their hair.