Local girl living with alopecia sees encouraging results from new medicine

TOLEDO, Ohio (WTVG) - Alopecia is an autoimmune disease that causes hair loss. It affects men, women and children. September is Alopecia Areata Awareness Month.

This is the story of a young Toledo girl who has been living with the disease for most of her life and the new medicine that’s providing encouraging results.

11-year-old Kayla Massey was diagnosed with alopecia when she was a toddler. She and her family are cautiously optimistic about a promising new treatment she started taking earlier this year. Kayla is one of millions of Americans living with alopecia.

“For about nine years, she has been completely bald. Her eyebrows, her eyelashes. She has no nose hair, so her nose is running all the time because there is no nose hair. I have heard of children having more earaches because they don’t have hair in their ears,” Jonelle Massey, Kayla’s mom said.

It’s a lot for a young girl to deal with.

“So many psycho-social impacts on the child and really on the family as well. She really is a little girl trying to be strong for her family,” Jonelle Massey said.

But Kayla Massey doesn’t let the disease slow her down much.

“Kayla is a diva. She loves dancing and ballet. She also loves girly things. She also likes cheerleading and gymnastics. She’s very insightful. She often puts things into perspective for my husband and I through this journey of alopecia,” Jonelle Massey said.

Kayla Massey was diagnosed when she was three years old.

“There have been great strides over the last ten years with scientists working on a medicine that blocks the immune system from attacking the follicles,” Jonelle Massey said.

Kayla began taking the medicine in March. It’s a JAK inhibitor, which is described as an immune-modulating medication that interferes with signals in the body thought to cause inflammation. “I think she is cautiously optimistic. She’s not making a huge deal about it. She’s never had hair she remembers, she was three. Right now you have to take the medicine every day. If you stop taking it, your hair falls out. They are looking at a treatment that is not needed every day.”

Kayla Massey saw results in a matter of weeks.

“Within three and a half weeks, she had eyebrows and eyelashes. About four months later, most of her head was covered with hair,” Jonelle Massey said.

The Massey family is focused on helping fund research that develops other treatment options that could one day lead to a cure. They are part of a fundraising walk for the National Alopecia Areata Foundation later this month. It will be held in Cincinnati on Sept. 23rd. Even if you can’t make it to the walk, you can still make a donation.

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