Missouri college student embraces condition that causes baldness

COLUMBIA, Mo. — By the age of 6, Madelyn Munsell had no hair, no eyebrows, no eyelashes.

Everyone called her "the bald girl," she said, until they got to know her. Then they called her Maddy.

Munsell, now 21, was a toddler when she was diagnosed with alopecia areata universalis, a medical condition involving complete and rapid loss of all hair, including eyebrows and eyelashes. It is the most severe form of the autoimmune disease known as alopecia. This particular form is also the most rare, affecting just one in 200,000 people.

"I lost my hair around 18 months old," Munsell said. "Obviously I don't remember it, so I don't know the exact timeline, but I know it all happened kind of quick."

The condition didn't just affect her appearance. Munsell said she was bullied as a child and often hid her condition behind expensive wigs. Later, she discovered music and was able to embrace her condition. A senior at the University of Missouri, she is a vocal performance major, sings in musicals and operas, and fronts the local band Mocklove. Her self-produced debut album, "Laylah," was released in 2013.

Alopecia areata is the most common variation of the autoimmune disease and presents itself as round, smooth patches of hair loss on the body. Alopecia areata totalis results in total loss of hair on the scalp. Munsell's condition is the third type of alopecia, where all hair is lost.

According to the National Alopecia Areata Foundation, the condition results when the body's immune system attacks healthy hair follicles by mistake. In all forms of alopecia, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. In all cases, hair regrowth may occur after many years, even without treatment, but it is never a guarantee.

The cause is still unknown. Some researchers believe it is a combination of genetic susceptibility and environmental triggers outside the body, such as bacteria or viruses that may confuse the immune system and cause it to attack the hair follicles.

"I just started losing my hair," Munsell said, "and in a couple of months it was all gone."

While alopecia areata has no cure, researchers have worked diligently to find a way to reverse its effects. Success has been noted on a number of fronts, including new drugs designed to attack the cause, as well as existing drugs with an unexpected side effect of restoring hair.

In 2014, researchers at Columbia University Medical Center reported they had identified the immune cells responsible for attacking hair follicles in those with alopecia areata. They tested an FDA-approved drug, known as Ruxolitinib, and found that it destroyed the cells and restored hair growth in a small number of patients.

The Columbia Missourian reports that the team first studied mice with the condition and worked to detect the specific immune cells that attacked the hair follicles. Using Ruxolitinib, a new type of drug known as a Janus kinaseinhibitor, the mice were able to regrow all of their hair in 12 weeks. After stopping the treatment, the new hair remained for several months.

The drug was then tested on humans with alopecia areata, specifically those with 30 percent hair loss or more. Three of the patients in this study had their hair growth completely restored in four to five months of taking the drug.

A separate case at Yale University, also reported in 2014, involved a male patient with alopecia areata universalis, Munsell's condition. Under medical supervision, his hair, eyebrows, eyelashes, and even facial and armpit hair, returned.

"Historically, there were no treatments for severe forms of alopecia, at least nothing that was reliably effective," said Brett King, an assistant professor of dermatology at the Yale University School of Medicine, in an interview last month.

"In the last couple of years there had been new research showing what the biology surrounding alopecia was really like, giving researchers a chance to learn more about how to reverse it," he said.

King believes the future is bright for alopecia research, that a number of FDA-approved drugs could be available within five years.

"I think it could usher in a whole new age for these patients," he said. "They have a reason now to be hopeful for a treatment that could really work for them, rather than feeling despair for a condition they always thought was incurable."

Munsell, now comfortable with her lack of hair, said she prefers to distance herself from the emerging world of alopecia treatments.

"Alopecia has been a very positive experience for me, so I would never really participate in treatment," she said.

She said she supports those who do wish to try new treatments.

"For the people that do need treatment for themselves or really want treatment, I am so for it because nobody deserves to experience something negative in their life," she said.

When she was a child, Munsell's alopecia was treated with a squaric acid, most commonly used for warts.

According to the National Center for Biotechnology Information, the acid treatment normally resulted in 80 percent hair regrowth in those with less severe forms of alopecia, but only 49 percent in those with a more severe case, like Munsell.

Once applied to a patient's skin, the acid will typically irritate the skin and create an allergic reaction in the form of a rash. The immune cells, formerly attacking the patient's hair follicles, would then be tricked into attacking the rash instead.

To some extent, the treatment did work for Munsell, with hair slowly returning in small patches on her head. Still, with her severe case, there wasn't much chance to see 100 percent success.

Still a young child, she couldn't take the pain and irritation, so the treatment was abandoned.

Munsell said her family kept her going when times were tough, and they boosted the confidence she has today.

"I had a household that was always trying to lift me up rather than put me down," she said. "They never made me think about that fact that I didn't have hair."

Her parents also made sure that her life was full of music from the start.

"I was singing right out of the womb," said Munsell with a laugh. "I was born to the 'Henry VIII' soundtrack because my mom wanted me to come into the world with a bang."

Source: Missouri college student embraces condition that causes baldness