Nigerian Mothers Share Candid Details About Their Struggles With Managing Their Children Living With Alopecia
Alopecia is an autoimmune condition that results in the partial or complete absence of hair from areas of the body where it normally grows. While the condition has been reported in all ages, it is more common in children and young adults, according to experts.
Managing alopecia in children could, however, be tough due to how children with the condition are ignorantly stigmatised.
Some mothers shared their experience of managing children with this autoimmune condition.
Mrs. Patricia Oguntunwase and Mrs. Ifeoma Chukwuka are two mothers who have become connected by one shared challenge: Battling with the management of childhood alopecia.
This is because both have daughters who suffered from different variants of the autoimmune condition and coincidentally, both their daughters began suffering from the condition at the same age of three years.
For Mrs. Oguntunwase, it was an intense journey that lasted a year while for Mrs. Chukwuka, it has been six years of managing her daughter with the condition.
The battle with alopecia in her daughter, Treasure, Mrs. Oguntuase said, began on 20th February 2020.
Recalling the day, she said it was an unforgettable day because on that day and without any previous sign a tuft of hair fell from the three-year-old’s full head right from the root leaving a shiny island.
Mrs. Oguntuase said she initially waved it off as a non-issue and blamed it on the stylists who made Treasure’s hair. According to her, she assumed the hair fell off because it was too tight hand. She said that she believed that the hair would grow back. It never.
Instead, some weeks later while loosening the little girl’s hair, her hair fell off in patches without so much as a gentle push or a violent tug at each tuft where her mother pulled.
Speaking with PUNCH, Oguntuase recalled that she was shocked to see her daughter’s hair pulled off like that and was worried. She said:
“Anywhere and any part of the head that hair fell out from was just shiny. I was advised to cut everything which we did thinking that it would grow back but several months after her head was just shining. No growth.”
Cancer or spiritual attack?
Mrs. Oguntunwase recounted the trying time that lasted a year, noting that it was painful for her and her husband to see their daughter without any hair on her head at such a tender age. She said:
“At first, I was thinking if it was a spiritual attack. At one point her dad was concerned that maybe our daughter had cancer. He’d look at her and say, ‘this girl is lean now, she is losing weight, are you sure it is not cancer?.”
While the family worried about the cause, she said people bombarded them with suggestions of what to do, and where to go, for a condition they knew nothing about, adding that many people said it was a spiritual attack. She recalled:
“Some people advised me to see a spiritualist that it is not ordinary, there must be something attached to it. A girl that had hair and suddenly lost all her hair and you know hair is the glory of any child. I got so worried and got prayerful even doing midnight prayer.”
What type of health condition is alopecia
A Professor of Dermatology at the College of Health Sciences, Bayero University, Dr. Yusuf M-Shehu, explained that alopecia is a general name for hair loss, adding that there are, however, different types like alopecia areata, and alopecia universalis that could help indicate the type of hair loss experienced.
Alopecia areata, he said, is an autoimmune condition where the body attacks the hair follicles and can occur in any age group.
Also speaking with PUNCH, Dr. Excel Uche-Amadi, a Consultant Dermatologist with Vinci Hair Clinic, Ikoyi stated that the most common form of alopecia that affects children is alopecia areata.
Just as Treasure experienced a regrowth, the consultant dermatologist said children with the health condition stand a better chance of hair regrowth with adequate treatments.
First time hearing children can suffer from alopecia
Instead of using uncertain remedies, Treasure’s parents decided to take her to a dermatologist at the Lagos University Teaching Hospital, Ikeja.
Mrs. Oguntuase said they took Treasure to the LUTH last year to seek an expert opinion, noting that it was the expert that eventually told them that Treasure was suffering from alopecia areata.
Learning from the doctor that Treasure, though in perfect health, was suffering from alopecia areata unsettled the mother but the attending dermatologist explained to her that she could be among the lucky ones who get hair regrowth. She was, however, told but it was a fifty-fifty chance.
“He said I should be hopeful, prayerful that she could just be one of the lucky ones to get a regrowth.”
The expert then recommended an ointment for Treasure’s hair and asked me to be hopeful of regrowth.
Taunted by classmates and on the street
Mrs. Oguntuase said that for a girl of three years, constant stares and curious glances made Treasure to be unduly anxious, disclosing that eventually to ward off intrusively curious eyes, she was given wigs and caps to wear.
This, she said, however, did not stop the discrimination and stigmatisation that Treasure suffered from both adults and children, at home and in school.
Inconsiderate remarks and unkind words were not too far from the lips of many who asked why such a young child should be without any hair.
Mrs. Oguntunwase said her heart broke each time her daughter came home crying telling her how she was treated by her classmates in school. She narrated:
“It was traumatic, especially in school. She used to tell me that sometimes, some of her classmates would watch when she was not concentrating, they’d pull off her cap to make a joke of her.
“Then there’s a market close to our house and she told me that anytime she was passing by the market, the children there were always making jest of her calling her afari (Bald) and all that.
“Those things affected her so much that she couldn’t go out without wigs and caps. To manage the emotions of a three-year-old feeling that way was tough to handle.”
But the little girl’s resolve changed last year when she met Tolulope Oguns, a woman who also lives with alopecia, for the first time.
Her mother recalled that after Treasure met Oguns, the then four-year-old Treasure resolved not to hide her alopecia and said she would not care about what people would say or think.
She had become confident in herself after the encounter with another lady suffering from alopecia. After dealing with the auto-immune condition for a year, Treasure’s hair luckily grew back, according to the mother.
Mrs. Oguntuase, however, noted that Treasure’s battle with alopecia was an extremely traumatic and trying time for the family and the little girl.
My first daughter’s battle with alopecia started suddenly
Similar to Treasure’s plight was the case for Chimamaka who suffers from an advanced form of alopecia known as alopecia universalis.
According to experts, Alopecia universalis is characterised by the complete loss of hair on the scalp and body. It is an advanced form of alopecia areata.
While the cause of Alopecia universali is still unknown, it has been described by experts as an autoimmune condition in which the person’s immune system mistakenly attacks the hair follicles.
A person with alopecia universalis loses all their hair: eyebrows, eyelashes, facial hair, body hair, and hair on the head.
Six-year battle with alopecia universalis
For six years, Chimamaka has battled with the condition. Her mother recounted:
“She used to be hairy like me but everything suddenly started falling off. When she turned four it became so obvious, her hair was in patches like it was ringworm but it was not ringworm. There were no rashes on the patches.
“I was not happy at all because she was a child and she didn’t understand. I was wondering how my girl child, my first daughter, all of a sudden started losing her hair.
“It became worse because she lost everything, even her brows, and eyelashes.”
Chimamaka’s mother said she eventually took her to the Federal Medical Centre, Umuahia where she was told her daughter had alopecia universalis.
Several tests certified Chimamaka healthy except for the hair loss, she said.
A cure with a consequence
Despite Chimamaka being certified healthy, Mrs. Chukwuka said, they kept on looking for a cure.
She said that a dermatologist told them there was a drug but it was not guaranteed to make her hair grow back and worst of all it had a side effect. She said:
“He said she would have stunted growth. I declined that drug and stopped searching but I still believe that there’s nothing God can’t do.”
Parents told their children to stay away from my daughter, they said she had cancer
As there’s little knowledge of the condition, Chimamaka’s mother said she faced discrimination in school and from the parents of her classmates.
Mrs. Chukwuka revealed that it felt like a physical battle at times as she had to speak out in defence of her daughter almost all the time to explain to other parents that her daughter is in perfect health. Mrs. Chukwuka said:
“My daughter was worried because she couldn’t fit in with her mates and was always wondering what was wrong with her hair and asking why she didn’t have any hair.
“Pupils in her class started complaining. Some parents would tell their children not to go close to her in the class. They said that my daughter had cancer. I said no, she only has alopecia.”
The mother said she was helpless and all she could do for her daughter was reassure her and teach her self-confidence.
Stares from people, fingers pointing at her daughter, and all manner of suggestive and intruding gestures, she said, have been thrown their way from strangers. It has been a tough situation, the mother of three said.
Mrs. Chukwuk disclosed that she miraculously noticed late last year that her daughter’s condition was changing, noting that she has spotted hairs, ‘like dot’ growing on her now nine-year-old daughter’s lashes.
She says she is still hopeful for a miracle, “There’s nothing God cannot do,” she said firmly.
According to the American Academy of Dermatology Association, hair loss due to alopecia sometimes regrows even without treatment.
“Hair may regrow without treatment. This happens more often when someone has a few bald patches. When the hair regrows, it may fall still out again—or it may not,”
the AADA noted.
Children with alopecia could suffer abuse, fall into depression
In May 2022, the news of a 12-year-old American girl, Rio Ball, who committed suicide after enduring alopecia-related bullying spread like fire.
This singular sad story highlights how much impact bullying from both adults and children could affect a child living with alopecia.
Alopecia in children, according to experts, is a serious issue that could impact the mental health of the child depending on how it is handled.
Speaking with PUNCH correspondent, Tolulope Oguns, founder of Heroic Alopecia Foundation, recounted how several children with alopecia have been subjected to dehumanising treatments like burning of their heads and being locked up just because a herbalist or pastor said so.
Oguns, who said she has met over 80 people living with the alopecia, fears there could be many more children affected by this condition in hidden communities, noting that their fate as regards how they are treated remains unknown because they are dependent on their parents.
She called for an awareness campaign on the health condition, noting that more Nigerians need to be educated about alopecia.