One day, while combing through my daughter, Airlee's hair I felt a clump of it fall through my fingers. My heart sunk as I stared at a shiny, bald patch on her scalp.
Four years prior, when Airlee was aged four she experienced , it seemed it was happening again. I combed over the patch hoping that Airlee hadn't noticed. Afterwards I rang her dermatologist and made an appointment. Once again, we started to use an ointment called diphenylcyclopropenone (DCP) on the bald patches and hoped that Airlee would once again have hair. Easy enough, or so I thought! But the hair started falling out quite rapidly. The DCP ointment was applied to her increasing bald patches, but soon there were more bald patches then hair. Airlee complained that the ointment stung but we were told by medical professionals that it was a sign it was working. Her scalp was so irritated that combing her remaining hair was torture and brushing too hard just made more hair fall out. I became quite creative with styles that covered the bald patches, but I was fighting a losing battle. The alopecia was winning and soon I was unable to hide Airlee's hair loss.
Jeniveve admits she would cry alone in the shower as she initially struggled to cope with her daughter's hair loss. Source: Supplied
I noticed that Airlee's lymph modes were inflamed, and we discovered she was having a severe allergic reaction to the ointment. We were told to stop using it immediately. By this stage COVID had hit and we were told that the only other treatment that might work wasn't an option as it was an immune suppressant. I tried to remain unfazed by Airlee's hair loss but always trying to hide the hair that had fallen on the ground was taking a toll. As more hair fell out, Airlee's confidence also dropped. She would no longer look in the mirror, instead she put her head down as she walked past. I couldn't even get her to go to the mailbox, she would say, "in case someone sees me Mum!” I remember often crying in the shower, exhausted from staying up for hours at night while everyone was sleeping researching alopecia and what I could do to promote hair growth. I was exhausted from trying to create a calm environment, as I read stress can be a trigger, while home schooling, working from home with a very active two-year-old, and living through a pandemic which, like everyone else meant we couldn’t see any family or friends. Watching my beautiful daughter go through such a life changing event was extremely difficult.
During lockdown Airlee completely lost her hair and she asked that I continue to home-school her forever as the thought of other kids seeing her without hair filled her with anxiety. She had gone from a girl that would bounce out of bed and couldn’t wait to get to school, to a child that was absolutely dreading going back. I contacted Airlee’s teacher and explained the situation. She was a lifesaver and came up with an idea to make a video of Airlee explaining to her classmates that she would look different when they went back to school and that in her words, “I’m not sick, I don’t have cancer, I’m just me, Airlee with less hair”. The Youtube clip was then sent out to the class.
Airlee is now confident at school and proudly took her wig off in front of 250 students. Source: Supplied
When school returned, initially Airlee wore a wig, which wasn’t really her. I remember dropping her off the first day back after restrictions were lifted and crying all the way to work as I worried about how she would cope. The wig was way too hot, and she worried about it falling off and kids seeing her without hair. Her teacher then showed the YouTube clip to the rest of the school and the students were allowed to ask questions. Once everyone knew Airlee wasn’t sick she began to relax. She started to take her wig off just in the classroom, then at recess time while wearing a hat. Finally, she stood in front of 250 people and removed her wig in front of everyone. This was my proudest moment as a mother, I clapped as tears rolled down my face. Airlee had come so far.
But I remember one day Airlee decided to look in the mirror and she sobbed uncontrollably as her gorgeous, ridiculously long eyelashes were also all gone. I had to physically lift her onto her bed as she could no longer stand. As I wept with her, I decided that we needed to focus less on hair loss and more on Airlee’s mental wellbeing. We focused on how being different is a good thing and some of the positives of not having hair - no nits and never having a bad hair day! Once Airlee felt like she didn’t have to hide behind a wig she gained so much confidence – to the point I would describe her as a bit of a dare devil, ready to take on the world. As I reflected with Airlee on this journey and on how far she has come and she said, “My Alopecia is my super power,” and I think she is right.
