CHILDREN LIVING WITH ALOPECIA PART 2: THE EMOTIONAL ASPECT

“This is a really important ‘Red Table Talk’ on alopecia. Considering what I’ve been through with my own health and what happened at the Oscars, thousands have reached out to me with their stories. I’m using this moment to give our alopecia family an opportunity to talk about what it’s like to have this condition.”

Those were Jada Pinkett-Smith’s exact opening words of the episode of her talk show dedicated to alopecia. Pinkett-Smith disclosed her own diagnosis in 2018, and this episode of the ‘Red Table Talk’ launched just months after her husband, Will Smith, slapped Chris Rock at the Oscars for making a joke at Jada’s expense related to the condition. 

She followed the above quote up with a controversial speech concerning the Oscars fiasco.. I believe she needed to speak out, since her show was about alopecia, and it’s been in the spotlight ever since the controversial slap.  However, some viewers believe she’s using this as a smokescreen to avoid taking responsibility, while others agree with me that she made the right choice and raised awareness about this serious condition. 

Just like Jada Pinkett-Smith, I’m writing this blog post from a place of experience, empathy and desire to increase awareness. After being diagnosed with this condition at age 33, I was deeply disturbed by my diagnosis, even as an adult. At one point, I couldn’t hold back the tears. Being the control freak that I am, it felt like I was losing control over my endless cycle of hair loss. The fact that I couldn’t lay my hand on a plausible cause made it even worse. Alopecia was traumatic for me, and I can only imagine how difficult it must be for a child. 

After listening to the story of Niki Ball, an Indiana mom of 12-year-old alopecia patient Rio Allred who died by suicide, I felt the trauma of this diagnosis for everyone involved. This child was clearly so traumatized that she took her own life, and her surviving parents and siblings are suffering from her loss, too. An alopecia diagnosis always carries an emotional component, and it’s tough for adults but can be even tougher for kids. 

Case In View: The Rio Allred Story on the Red Table Talk 

I encourage you to listen to this episode of the “Red Table Talk” in which Niki Ball shared the heart-wrenching story of her 12-year-old daughter who was bullied due to alopecia and eventually took her own life. 

This was a heart-wrenching half-hour episode, and everyone present, including Jada’s mom, Adrienne Banfield-Norris, and her daughter, Willow Smith, got emotional as the details unfolded.. As the actress and TV host spoke with Rio Allred’s mother, the emotional toll of alopecia became clear,

To put in perspective, Alopecia areata is a hair-loss condition that Pinkett-Smith and an estimated 6.8 million others suffer from in the United States. This condition doesn’t segregate. It cuts across ages, genders and ethnic groups. The symptoms can differ from one person to another, and in some instances, this disease can impact a person’s sense of identity. 

“Three months ago, this story broke our hearts,” Jada Pinkett-Smith’s mother, Adrienne Banfield-Norris,said on the show. It’s easy to see why.

• Rio Allred’s Story

Rio Allred was diagnosed with alopecia after her family discovered a bald spot on her head in December of 2020. Her mom, Nikki Ball said on the show, “With the hair loss, she [Rio] was so strong. She just rocked it, even when it was still falling out and she just had these big bald patches.” 

Nikki added that they tried creams and painful injections to save her daughter’s hair, but had no luck. Ball added, “She said, ‘I don’t want to do that anymore. Can we shave my head?’ So, we did, and she just glowed.” 

Rio’s head was shaved right before the start of seventh grade, and her grandma bought her a wig that she was excited to show off. However, when she got back to school, she wasn’t met with compassion from the other kids. 

According to her mother, she was relentlessly bullied by her classmates. She told her mom she didn’t wish to wear the wig any longer: “She had it [the wig] ripped off her head. She’d get smacked upside the head walking down the hallway, and that was within the first two weeks.”

Even when Rio stopped wearing the wig, her mom said the bullying and taunting didn’t stop. Finally, the family considered moving her to a new school or trying homeschooling. 

“One of the last things she had told me — she had a really bad day — she had a hat to wear during the winter because some of the classrooms are really cold. She walked into this one class and this one kid was just like, ‘Rio, put your hat back on, I can’t stand the glare.'”

Sadly, on March 14, 2022, Rio committed suicide. 

In Ball’s words, “No one prepares you to sign a death certificate for your child. Or watching a coroner’s van pull up or having to sit your 7-year-old down and tell her that her sister’s dead. It was the worst day of my life.”

While listening to Ball that day, Jada Pinkett-Smith, her daughter Willow, and Banfield-Norris felt the impact. Pinkett-Smith, with teary eyes, said, “Thank you for sharing. I feel like this is really important for children to understand that communication and the amount of pain that’s left behind when we do things to ourselves.”

• The Oscar Incident Spotlight on Alopecia

The 2022 Oscars took place two weeks after Rio’s death. During the event, Will Smith slapped presenter Chris Rock after he made a joke about Jada Pinkett-Smith’s alopecia-prompted baldness.

In the interview, Ball noted the influence of the Oscar incident. “What is the universe doing right now? This is crazy,” she remembered thinking. “People are going to be Googling, ‘What is alopecia…. What is this that we’ve never heard of?’ It’s not a joke.” That moment brought alopecia to the spotlight. Ball’s comments reaffirm my belief that Jada was right to address the issue,as this conversation further raised awareness about alopecia.

In certain ways, I’m thankful for what happened at the Oscars. It’s the main reason many people are currently aware of alopecia. Moreover, Chris Rock’s joke and Will’s reaction gave us a glimpse into what children with alopecia often endure at the hands of bullies.. Adults like Chris Rock can be cruel, and so can kids–Rio experienced teasing like this every day when she went to school.

Rio Alldred’s family wanted to give a voice to children who are bullied and help change their lives, so they created a platform in March of this year for victims of bullying. According to Nikki, “Rio’s legacy will be that no other family, no other child will ever be in this position if we can help it. It truly makes me feel like she martyred herself because she knows that we would go to war for her, and that’s what we plan to do.”

Rio’s family describes her as loud, funny, witty, with a smile that lit up her whole face from mouth to eyes. She was such a sweet child, and it breaks me to imagine the pain that drove her to take her life. “She was a good soul and she did not deserve the ridicule that she received,” added her stepmother, KaSandra Jackson. I couldn’t agree more. Having gone through alopecia myself, I can say that no one, especially children, should have to endure it without emotional support.

Children and Alopecia

As parents, we always want to protect our children from any hurt and difficulty. That’s why a diagnosis of alopecia areata can be just as, or maybe more, concerning for the parents as for the child. As a parent who knows firsthand what alopecia feels and looks like, I know what a heavy emotional burden it places on a child.

Sadly, most parents or guardians of children with alopecia areata confess to feeling guilty. They may feel they contributed to their child’s ailment by transferring the “wrong” genes. I’ve also seen cases in which parents felt helpless because they couldn’t stop their child’s hair loss but wished they could ease their child’s emotional pain.

For anyone parenting a child with alopecia, the American Psychological Association says it’s crucial to keep the following in mind:

Remember, the best thing you can do as a parent with a child with alopecia areata is to stay informed, so you can help your child stay informed as well. Learn all you can about alopecia areata, so you’ll know how it affects your kid’s emotional health and your whole family. It’s important to educate yourself about the tools and support available to your child and yourself. This blog post will get you started! 

Alopecia Areata in Children: Emotional Effects

Children with alopecia areata often feel socially deserted and overprotected. I felt this way, even as an adult. Like me, these kids may face fear and frustration or be angry and upset that they “got” alopecia areata. When these feelings are not appropriately managed, they can result in anxiety, distress, withdrawal from loved ones or altered behavior.

Although they often experience the same mental health problems as adults, children can often not wholly describe what they are feeling and experience feelings more intensely.. Recognizing depression and/or anxiety in children may be challenging, so it’s important to watch for indicators.

The Centers for Disease Control (CDC) describes several warning signs of childhood depression:

Also look for physical symptoms such as exhaustion, headaches and stomach aches.

Other Childhood Victims of Alopecia’s Emotional Impact

It’s worthwhile to browse these Healthtalk interviews of children suffering from Alopecia. They all talked “about the emotional side of living with alopecia in the context of family life, going to school and university, and having friendships and relationships.”

• Emilie: Diagnosed At Only (4) Four Years Old 

One interview featured Emilie, who experienced intense anger as a child with alopecia. She described losing her temper when other children quizzed her about her hair loss. However, she became more confident after taking anger management classes. Now, at age 18, she sometimes jokes about her alopecia.

Quote from the Interview

“I was a very angry child, anyone who would talk to me about it, anyone who would come up and, especially little kids because they don’t understand what’s going on, they’re very upright and, you know, “Why do you have no hair?” and things like that. “So, I used to lash out quite a lot and because of that I ended up getting anger management classes at a very young age to help me cope with it. Cos I used to wear coats that had hoods on and caps and things and I felt very uncomfortable in my own skin because I found it difficult to make friends because of what I was going through. But as I grew older and my friendship group matured, they accepted it perfectly okay and I accepted it and, yeah, it’s become me.”

A lot of my primary school I’d make friends, lose friends, because they’d make a comment and I’d get very iffy about it and it just wouldn’t end well and mostly it would be my fault because of the way I handled it. But after I had these anger management classes and learnt how to cope and had techniques to use whilst in these kind of situations, I became very, very used to it and actually it brought me confidence. And then my friends saw that I was becoming more confident and they seemed to be more okay with it and people could then talk about it more freely, I wasn’t afraid to talk about it to people, they would make jokes about it basically, especially in high school. I actually made a few friends by making a joke. Yeah, I referred to myself as a celebrity at one point I looked like a particular celebrity and that’s how I made one of my friends on a bus, I just turned around and go, “Hey, I look like this person,” and they burst out laughing and I became friends with her and we’ve been friends ever since, so. It’s a good way to actually make friends as long as you joke about it and they know it’s okay and you’re not afraid to go forth with it basically”

• Michael: Diagnosed At Only (13) Thirteen Years Old 

Another interview featured Michael, who explained how tough it was to see his hair falling out every day. He granted this interview six years after his diagnosis, as a 19-year-old vibrant young adult.

Quote from the Interview

“The hair loss off my head was the most difficult. And also my eyebrows. Waking up in the morning and seeing it on my pillow was just, it just made me not want to get up or get out of bed. And then having a shower, and seeing more, more hair, or you know, just going down your body and on your hands as you wash your hair was horrible. Because I couldn’t do anything to prevent it at all. It was inevitable that it was going to happen, and I didn’t know when it was going to happen.

I needed to wash my hair every morning, so I could move my hair to cover the patches. And that, even doing that would make me see the different hair loss. And every day it would be horrible, every morning. And it was almost every morning that there was hair loss. So it was almost became expected. But even so, it was still difficult to deal with. But then, but then once I shaved my head I didn’t have to do that, deal with that any more. So it was, it made getting up much simpler.”

Deléna Thompson Shares Her Alopecia Experience

One other story that caught my attention, and that of many others, was Deléna Thompson’s. She started losing her hair when she was four years old, and at six, she decided to write her debut book about her ordeal with alopecia.

At a tender age of four, little Deléna Thompson received her diagnosis, which was hard to come to terms with at first. But now, she prefers to tell her story as a way to encourage other children like her.

Her debut book, ‘I Am Not My Hair’ is a heartwarming illustrated account of Deléna’s experience. She dedicates this book to every child out there who has ever felt different in any way, especially due to alopecia. The book reminds children, ‘Even though I don’t have any hair, I am still me.”

• Supportive Family

Deléna received support from her mom, a businesswoman who runs a nursery,  while writing the book. he and Deléna’s father, Delvin Thompson, from Haringey, North London, are ‘extremely proud’ of their brave daughter.

According to her parents, “We are proud of Deléna being able to talk and write about her experiences from her own perspective. Deléna is an inspiration to us all. She is an incredibly talented, determined and kind young girl. We often have to remind ourselves that she is only six years old.”

• The Emotional Impact of Diagnosis

Deléna was diagnosed with alopecia in 2019, after her mum noticed a coin-sized patch with no hair on her scalp. With each passing day, weeks and months, the hair loss got worse. So, her parents took her to a specialist where she discovered that soon her hair would all be gone and might never grow back.

Like other alopecia patients of all ages, this made her ‘very sad.’ She was bothered about how her friends at school would react, and the time the bald patches became difficult to style or hide, Deléna’s mom proposed the option of shaving it all off. I felt the pain as I read about how her mom had to shave her own head first, so her daughter wouldn’t feel so alone.

Deléna got scared when it was time to go back to school with no hair. She didn’t get the best reception from the other children at first. However, with backing from her parents and teachers, she was soon able  to embrace her mantra: ‘I am brave, I am smart, I am beautiful.’ In no time, this mantra helped her gain the confidence she needed to be happy again. 

• Deléna’s Take on the Book

Speaking to Metro.co.uk, Deléna says, “I wanted to write a book so I could share what it was like to lose my hair. I feel OK about having alopecia because I’ve learnt about why I have it and I know that having alopecia cannot stop me. I want people to be aware of alopecia and I want people to stop bullying people who have this condition, or look different. I want anyone who feels or looks different to know that they are not alone. They are loved and they will always have a friend in me.”

• Book Publication

Her book was published by BlakJac Media, a publishing firm established by former Deputy Head Teacher, Juliet Coley after overcoming cancer. This is the only house in Europe that specializes in publishing books written by Black kids.

The founder, Juliet Coley, shared with Metro.co.uk how she was inspired to ask Deléna to tell her story after meeting her. In her own words: 

“There are so many books out there about young Black girls embracing their beautiful and natural hair and after learning of Deléna’s hair journey I was impressed by the courage and strength she exhibited having none and thought her story would make a great book. I’ve experienced hair loss myself. When I underwent chemotherapy for colon cancer, I found the experience traumatic, so when I met Deléna, and heard about the positive way she dealt with it, I had nothing but admiration for her.”

Describing Deléna’s reaction after the book got published, Deléna’s mum adds: 

“When Deléna first saw her book, she was in shock. She signed some copies for her aunts, and afterwards she came and sat in my lap, and whispered in my ear, “Mummy I’m so proud of myself.” Deléna hopes through reading I Am Not My Hair, people will have a greater understanding of how people with alopecia feel, especially children and have greater compassion for those who are different.”

Children and Alopecia: Dealing with Bullying

Bullying is when your grade schooler’s hat gets yanked off her head and tossed around the bus, while she frantically tries to snatch it. It is when one of your child’s middle-school classmates calls her “gross” and warns everyone that she might “pass on” the condition she suffers from. Bullying makes your high schooler spend weekends alone because someone discovered that she’s wearing a wig and told others.

Bullying occurs in many ugly forms.. According to the U.S. Department of Health and Human Services on its StopBullying.gov site bullying is, “unwanted aggressive behavior among school-aged children that involves a real or perceived power imbalance.” StopBullying.gov says that children who bully often use their “power” to control or hurt others through physical, emotional or social means.

Tips from NAAF for Dealing with Bullying 

The National Alopecia Areata Foundation is on the front lines, working to stop bullying due to alopecia. If you suspect your child is getting bullied, they recommend these steps:

Get Proactive

If you believe your child may be suffering from one or more of these symptoms, schedule an appointment with your pediatrician Immediately. Your doctor can confirm whether your child is undergoing depression, anxiety, or a  similar problem. 

Remember, our children’s emotional wellness is crucial as physical wellness, and it  contributes to their success in school, work and society as a whole. Emotional struggles provide an opportunity for you to educate your child on how to cope with challenges in life. One of the best ways you can protect your child is by giving them the right information, when they need it and how they need it.