Children With Alopecia Day

Today is annually recognized as Children with Alopecia Day as a part of the Children's Alopecia Project (CAP). It is a day to celebrate children with all types of Alopecia.

Alopecia is an auto-immune disease where cells in the immune system surround and attack hair follicles. This attack on the follicle, causes the attached hair to fall out. This occurs when healthy cells view the hair follicle as a foreign body and begin to attack, much like they would when helping your body fight off a cold. 

There are many forms of Alopecia including, Alopecia Totalis which results in hair loss across the entire scalp. Alopecia Areata (patchy) is the form with one or more coin-sized patches on the scalp or other places on the body that grow hair. This type may convert into either Alopecia Totalis or Alopecia Universalis, but most commonly it remains patchy. Alopecia Universalis is another type, which is more advanced than Alopecia Totalis. This type results in hair loss across the entire scalp and face (including eyebrows and eyelashes), plus the rest of the body. 

Alopecia can not be cured, however, it is possible for many to regrow their hair.

As there is no cure, some individuals may go through cycles of losing and regrowing hair. There are also treatments available to stimulate the regrowth of hair.

The disease often develops during childhood or teen years, usually developing before the age of thirty. The National Alopecia Areata Foundation reports that approximately 6.8 million people in the U.S. and 147 million worldwide have or will develop Alopecia Areata at some point in their lives.

Jeff Woytovich, the founder of the CAP mission, said the program was developed to help children in need who are living with hair loss due to all types of Alopecia.

"We change the emphasis from growing hair to growing confidence," he said. "Building self-esteem, providing support and raising awareness."

The mission for CAP is to change the focus from grown hair to helping build the person's belief back up.

"Changing the emphasis from growing hair to growing confidence, building self-esteem in children living with Alopecia, providing support for them and their families, and raising awareness about the life-altering disease," Woytovich said.

Juliann Choma, a Swift Current resident was diagnosed with Alopecia Universalis at the age of 14.

When she started losing hair a year earlier, she had no idea why. 

"I didn't know what it was or why it happened," she said.

Choma has lots of experience with the disease now. Just before she turned 16, after losing her eyelashes and eyebrows along with chunks of hair, she made the bold decision to shave off any she had left.

While at first, she felt relief, the next day at school quickly changed things.

"The first day I went to school with no hair, someone just walked by and smacked me up-side the head," Choma explained. "I had three people at completely different times try to shine my head. I was tripped, I was pushed. I was just so angry.

"That was really hard because I was just over being picked on for something I didn't even get a choice in."

Awareness is a large part of the issue as many people do not know what Alopecia is or how it can affect an individual. 

CAP has many resources available on its website to help spread awareness such as recommended books, and sample letters to family and friends about the disease. 

They also highlight the importance of a 504 plan of their website and explain what it means.

"A 504 Plan is based on section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act and specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or post-secondary schooling," the website said. "Disability in this context refers to a 'physical or mental impairment which substantially limits one or more major life activity.' Alopecia is a physical impairment." 

Recommendations of a 504 plan for a child with Alopecia according to CAP include the following.

The child is able to wear a hat if he or she wants to wear one.

The child is allowed to have a buddy in his or her class who knows the child and knows he or she has Alopecia.

The child’s classmates are to be educated about his or her Alopecia. For example, brochures and/or DVDs are distributed to all classrooms or, in elementary school, the teacher reads a story about Alopecia.

All of the teachers and staff are educated about the child’s Alopecia so that they can be sensitive and supportive about any related issues that may occur.

Although anyone can get Alopecia, some factors, as listed below, increase an individual's chance of developing it. 

If a close blood relative has Alopecia; Estimates show that about 10 per cent to 20 per cent of people that have Alopecia, has a family member who has it. If you have been diagnosed with asthma, hay fever, atopic dermatitis, thyroid disease, Vitiligo or Down Syndrome. Or if you have been receiving cancer treatments with a drug called Nivolumab.

Choma explained that while she did receive some counselling, what really helped her was finding other individuals with Alopecia to talk to and connect with.

"There's Facebook groups, all over Facebook, the sweetest people and we all hype each other up," she added. "It's awesome. I love it. We all have our own little groups and sometimes well just FaceTime."

For more information about Alopecia and resources visit the Children's Alopecia Project Website.