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Timberlea woman working to help others with alopecia embrace beauty

Melissa Riley knows what it’s like to be the only bald woman in a room.

She lost most of her hair to alopecia when she was very young and although she covered her head with wigs for several years, she now goes bald.

“I’ve had alopecia since I was eight,” said the 42-year-old Timberlea woman, who is vice-president of the Canadian Alopecia Areata Foundation (CANAAF).

Alopecia areata is an autoimmune disease that affects hair follicles. Those with it often have other forms of autoimmune conditions such as type 1 diabetes, Crohn’s disease, rheumatoid arthritis, lupus and Graves’ disease.

“About two per cent of people have alopecia. That’s quite a few people, so it’s important to share information,” said Riley.

There are many types of alopecia, including:

  • Localized alopecia areata: one or more patches of hair loss on the scalp. Sometimes referred to as patchy alopecia areata.
  • Alopecia barbae: one or more patches of hair loss in the facial area.
  • Ophiasis alopecia areata: loss of hair on the sides and back of the scalp.
  • Sisaipho alopecia areata: loss of hair on the top of the head.
  • Alopecia totalis: loss of all the hair on the scalp.
  • Alopecia areata incognita: diffuse hair loss on the scalp – does not form full bald spots.
  • Alopecia universalis: loss of all the hair on the body including scalp, eyebrows, eyelashes, and body hair.

Source: CANAAF

“It didn’t bother me a lot as a child. There were a few moments where I was teased, but nothing consistent. I remember I saw a lot of doctors. I didn’t wear a wig until I graduated from high school but then I wore one until eight years ago, when I developed a latex allergy. It was a nice push, because I’d wanted to give up wearing a wig for a while but didn’t have the courage. Now, I shave my head and go bald.”

Riley often gets questions, with many people assuming she has cancer. Sometimes, without permission, people reach out and touch her head.

“When there’s a good opportunity, I talk to people about alopecia,” she said. “A lot of people don’t know much about it unless they know someone with alopecia.”

While many people with alopecia are the only ones in their family who have the condition, Riley has four other family members affected. One of those is her 13-year-old son, who was diagnosed with alopecia as a young child.

“It’s a mental health issue and being open is important. It’s not just about hair. We see the emotional toll it takes on the person and their family. With this, you don’t have control.

– Melissa Riley

“He’s been great about it,” said Riley. “His cycles through. He would lose hair in October and it would grow back over the summer. Now, it’s moved to his fingernails.”

Alopecia can result in fingernails being pitted and breaking and, in some cases, they peel and fall off.

Riley’s son attends meetings with her and is very knowledgeable about the condition.

Because hair often plays such a big part in people’s lives, forming part of their identity, its loss can be devastating.

“It’s a mental health issue and being open is important,” said Riley. “It’s not just about hair. We see the emotional toll it takes on the person and their family. With this, you don’t have control. Hair is presented as part of your image, especially in women, and caring for it is part of a daily routine, so it’s a big loss.”

People with alopecia and parents of children with the condition formed about 10 years ago to provide information and support. Since COVID-19 struck, most programming has gone online, but the first in-person national conference since 2019 is being held in Toronto this year and Riley plans to attend.

“To walk into a room and see 50-60 other bald people, it’s comforting,” she said.

This article came about because of my personal interest in, and experience with, alopecia, said reporter Lynn Curwin.

When I was in my early teens, I experienced significant hair thinning during a very stressful time. My hair remained thin but could still look OK. Years later, following a period of extreme stress, my hair thinned much more at a very quick rate. I now wear wigs, scarves or knit caps much of the time when I’m in public.

Losing hair has been very difficult emotionally. It certainly affected my self-esteem in a negative way and made it more of a challenge to battle depression.

I find learning, and connecting with others going through similar experiences, can be helpful. I hope the information in this article can help others.