Having a condition that causes hair loss can be very distressing. The Canadian Alopecia Areata Foundation offers vital resources, friendship, and support.
Alopecia Areata is an autoimmune disease that causes hair loss. It’s unpredictable, has no cure, and affects about two percent of the population of all ages — from infants to adults. With Alopecia Areata, the immune system cells — known as T cells — mistake the hair follicle cells as foreign and go on the attack.
Alopecia Areata comprises many different sub-groups. The three most common are localized Alopecia Areata, sometimes referred to as patchy Alopecia Areata on the scalp, Alopecia Totalis, total hair loss on the scalp, and Alopecia Universalis, complete loss of all body hair, including eyelashes and eyebrows.
There are various ways that Alopecia Areata can present. It can occur once in a lifetime, it can be cyclical (with phases of alternating hair growth and loss), or it can cause complete lifelong hair loss.
Alopecia Areata — a life-altering and psychologically devastating condition
Although not life-threatening, Alopecia Areata is undeniably life-altering and can be psychologically devastating. Melissa Riley, who owns a home daycare in Timberlea, Nova Scotia, has lived with Alopecia Areata since she was eight years old. “I was very quiet and introverted growing up, lacked confidence, and had a hard time getting a job later on,” she says.
For Anthony Gilding, diagnosed with Alopecia Universalis at age 14, losing all his hair was like losing his identity. “It’s really a psycho-social condition as much as a physical condition because you’re learning to become a completely different person,” says Gilding, now a fourth-year Honours Bachelor of Science student at Ryerson University in Toronto.
CANAAF offers support, information, and volunteer opportunities
The Canadian Alopecia Areata Foundation (CANAAF) is a registered Canadian charity that provides a range of services to support and empower those living with Alopecia Areata, along with their families and loved ones. These include patient support groups, mentorship programs, public awareness campaigns, Facebook groups, in-person conferences (during non-COVID times), virtual Zoom meetings, and financial assistance toward the purchase of a hair piece.
Having benefitted tremendously from CANAAF’s support programs, both Riley and Gilding now volunteer on its Board of Directors as Vice President and Director of Science and Research Communication, respectively.
For Gilding, who plans to become a dermatologist, being a board member is also a way to leverage his scientific expertise. “It’s really nice to be able to give back to the community and share my science and research insights, as well as get their support,” he says. He’s currently working with a team of dermatologists at Toronto’s Hospital for Sick Children on a CANAAF-funded study on the burden of disease in people with Alopecia Areata.
Alopecia Areata receives very little research funding because it’s often seen as a cosmetic condition with no physical symptoms. “People tend to forget just how much of a mental health issue it can be so it’s really important that it gets more research funding so that we can find better and more reliable treatments,” says Riley.
CANAAF relies solely on donations. By donating to CANAAF directly, you can help fund valuable research and ensure these critical patient support programs continue.
The Canadian Alopecia Areata Foundation thanks and acknowledges Pfizer Canada for contributing to the funding of this article.