How Childhood Hair Loss Affects Children and Their
Parents – and How to Approach It
By Regina Villemure, Founder, Children With Hair Loss
Hair loss in men and women is well-documented, but hair loss in children is not as well known. There are thousands of children every year who are diagnosed with hair loss for any number of reasons, including alopecia, cancer treatment, burns, rare diseases and disorders, trichotillomania…the list goes on.
No matter what the reason for childhood hair loss may be, for children, it can be unbelievably devastating from both an emotional and psychological perspective. Few children are able to accept their hair loss. Some don’t have hair on their head or have eyelashes or eyebrows. They look different – and looking different is oftentimes not accepted.
You may have heard the story of Rio, a 12-year-old girl who had hair loss and was ridiculed and bullied at school and elsewhere. Just a few weeks ago, she committed suicide.
Unfortunately, Rio is far from the only child with hair loss who has committed suicide. We have had recipients in our hair replacement program at Children With Hair Loss who have openly talked about the teasing, wig pulling and other cruelties they experience on a daily basis that lead to their thoughts of suicide as a solution to stopping the bullying. We are well aware of the emotional devastation and loneliness that sparks these thoughts and actions, and we do our best to ensure that Children With Hair Loss is a safe space for children and parents to share and work through their struggles.
For children with hair loss and their parents, the emotional roller coaster is an excruciating experience. Parents tell me stories of the ebb and flow of their child’s hair loss. One day, their child’s hair falls out, and they endure the initial devastation of that experience. Then, in a few months or a year, their child’s hair will grow back, and they get caught up in the excitement of finally returning to ‘normal.’ Then, maybe a year or two later, the distraught parents reach out to us because their child’s hair is falling out again, and they experience the heartbreaking realization that the family may need to deal with the issue on a long-term basis.
We had a young teenager in our program who had bone cancer and as a result, had to have her leg amputated. While her father was telling me her story, he began to cry when he said that, because of the cancer treatments, she had experienced hair loss, which was more devastating for his daughter than the loss of her leg.
Many of us can’t imagine that hair loss would be more devastating than the loss of a leg, but that’s the reality for many children because so much of one’s identity is associated with hair, one of the first things others notice and judge us by.
Every time we put hair on a child and turn them toward the mirror for the first time, it’s a life-changing experience – not only for the child but for us as well. They initially sit in the chair with their head down, not wanting to speak, until they look in the mirror. Their eyes light up, a bright smile creeps onto their face, they sit up straighter, and you can actually see the confidence returning to the child. We also see the reactions of the parents – often tearful as they watch their child smile again – sometimes the first time they’ve seen them smile in months. Giving hair to a child seems like such a simple gesture, but it makes all the difference to a child. They regain their identity, their self-confidence, and the will to make it through their hair loss journey because they feel good and look like themselves again.
Children’s Hair Loss: The Emotional Toll on Parents
Children’s hair loss can affect parents just as much as their kids. There is often an overwhelming sense of guilt, worry and absolute helplessness. They want to take care of their child and make the emotional pain go away, and there is absolutely nothing they can do to make it better. They feel like they can’t help their child. So, the reality is that a child’s hair loss journey is an entire family’s hair loss journey, and parents need just as much support as their children.
Many parents have expressed to me that they are secretly worried that their child has possibly contemplated suicide. We interact with people (children and adults) who are at their most vulnerable, and we constantly keep this in mind in order to provide the most empathetic services to them as we can.
Helping Children With Hair Loss
At Children With Hair Loss, we have dedicated ourselves to the mission of helping children and their families by supplying them with top-quality human hairpieces and wigs so they can just be kids. This is why we recruit hair replacement specialists and salons across the United States to partner with us. We supply the annual hair replacement to the child and work with our Salon Partners to provide fittings and styling throughout the year at no cost to recipients in their area.
Our promise to each of our recipients is that they can come back to us once a year and get a new hair replacement package at no charge. Knowing this helps families feel secure, and that they can live their lives without the worry about how they’ll be able to afford new hair replacements as the size of their child’s head grows, and as their style changes throughout the years.
Support Groups for Children With Hair Loss
On the first Saturday each November, we host our largest fundraiser of the year – our annual Charity Ball & Fashion Show that features many of our recipients from across the country.
We kick off Charity Ball weekend on Friday night with a private VIP Party for our recipients and their families at CHWL headquarters. The evening is designed to provide a casual and social atmosphere for the kids to catch up with each other and share stories – while their parents do the same. For many families, Charity Ball weekend is the only time they’re around people with similar experiences, so it’s a great opportunity for them to feel a sense of community.
During our VIP Party, recipients have their hair replacements styled and nails painted, and they choose runway fashions and practice their model walks for the Fashion Show that they’ll participate in at the Charity Ball on Saturday evening.
At the hotel where our recipient families stay for the weekend, we provide classes for kids and their parents to help them learn more about styling and caring for their human hair replacements and how to enhance their eyebrows and eyelashes. Our eyebrow and lash class is hosted by Occhi Lash & Brow Studio from Chicago and the hair styling and care class is hosted by Diana Ford, a hair replacement specialist from California.
Our Special Guest, Kayla Martell, Former Miss Delaware and Hair Loss Mentor, spends time with our kids throughout the weekend, sharing her own hair loss story, and providing a tremendous amount of support to our recipients and their parents.
There is never a shortage of shared stories, tears, laughter, and pure happiness during our VIP Party and Charity Ball Weekend!
We also host a private support group on Facebook that is membership-based, limited to our staff and recipients and their parents. The group provides a safe space for them to interact and share their stories with each other throughout the year.
Salon Partners: How to Help Children and Their Parents
Salon staff should have an understanding that if a child with hair loss comes to them for help, they may be experiencing low self-esteem, and the parents may be apprehensive. So above all, the need to be sympathetic is paramount.
I’ve learned that it’s imperative to be in the moment. When you’re able to immerse yourself in the struggles that the family is enduring, it allows you to have a deeper realization that you are doing something good and positive for the child and their whole family.
There are many times that it can be heartbreaking to see and hear what a child has endured with their hair loss and their medical condition. I’ve found that at times, I get emotional during interactions with kids and their parents. When that happens, I excuse myself for a few minutes to get composed (or “grab something from the back”), then I return with a smile and show the confidence that they need to see at the moment. We’re doing tough, but life-changing work.
Helping Our Recipients Find Their Style
The relationship we hold with each of our recipients is of the utmost importance to us. All of our recipients and their parents know that they can call and talk to us about any questions they may have. We respect their wishes about what color and style of their hair replacement. We work in a collaborative effort with the child, family and Salon Partner stylists to achieve the best result for the child.
It is also important that the child knows how to care for their piece so that it stays fresh and beautiful throughout the year. We work with our Salon Partner stylists to ensure that the child has an understanding of how to make it last and keep it looking good. It’s important that they know the different ways to wash, curl and blow-dry their hair.
Stylists at our Partner Salons have told us what a good feeling it is for them to help our recipients and know the quality of human hair replacements and the services we provide them.
Taking Care of Each Other
Life is no cakewalk, even under the best of circumstances. Bullying, cruelty, and thoughtlessness are all around us. Being mindful of and more sensitive to each other’s situations is what we really need more of right now.
Children With Hair Loss exists to make people feel better about themselves – to feel confident enough to face the world, whether that’s kids at the school playground, on the school bus or people in line at the store. At the end of the day, that is what is most important.
I recently received an email from a parent who sent me a picture of their daughter. It read: “Thank you for your generosity. My daughter was able to look and feel like a princess.” To hear that is so rewarding. It’s why we do what we do.