Holding onto the side of the swimming pool, I shouted across to my daughter Evie. “Go on,” I yelled. “You can do it!”
My heart swelled with pride as I watched my five-year-old swim like a mermaid across the pool. Like any mum I was pleased. But my pride was extra special, because my little girl wasn’t only conquering the pool. She was learning to live life to the full with the same rare Hair Loss condition, I suffered with, Monilethrix. It leaves your scalp covering in small brittle hairs that break easily.
I first realised I was different when I was about four. Looking back at the school pictures where I wore ill fitting NHS wigs, I just cringe. In those days that’s what people did. It was unthinkable for me to go bald. I was constantly called ‘Wiggy’ by other pupils and learnt to live with being different.
I have four siblings and my brother Robert, now 47, also suffered with the condition. By senior school he shaved all his hair off and got rid of the wigs. He says it was the best thing he’d ever done.
As a woman I’ve always wanted a full head of hair. I used to have a pageboy style wig which was the only style available to children then. My life revolved around trying to avoid wind and rain. The thoughts of it blowing away in front of people haunted me. Only once, in class, did someone knock it off my head. After that I was always looking over my shoulder, aware of people standing behind me.
Swimming with the school was impossible. I always begged my mum to write me a note so I could be excused. Despite my hair condition I desperately tried never to let it hold me back. All through school I ignored the comments and when it came to meeting boys I was always upfront with my condition. I met my husband Tom, 57, in 1989 and we married two years later. As always I told him about my condition straightaway. ‘You are beautiful the way you are,’ he told me.
Despite accepting me, I have always refused to let Tom see me without a wig. Even at night I put on an old one to sleep in. Tom says he wouldn’t mind seeing me bald, but I have my personal pride. When I am washing what little hair I do have, I always call downstairs, ‘I am washing’ and he knows not to come in.
After years of wearing wigs my scalp is covered with marks and lines. The condition causes damaged follicles so that leaves unsightly red bumps on the head. Even on holiday in 80 degree heat in Spain I insisted on keeping my head covered up. I just don’t like people staring at me. The only people who have seen me without my wig are my kids. It was normal to them that mummy has no hair and so I didn’t feel embarrassed.
When I first fell pregnant my immediate thought was; ‘Will my baby have the same condition?’ because I know it’s genetic. When Thomas, now 15, was born with a head of hair and I literally sighed with relief. Unfortunately after Evie’s birth I didn’t feel so relaxed, despite her being born with a dark crop of hair. As soon as I held her for the first time I knew something was wrong. My sister Sandra, 59, said I was imagining things after I noticed the texture of her hair was coarse – just like the bits I have.
It took a year for doctors at Birmingham children’s hospital to confirm what I knew all along, Evie has the same condition as me. I cried when I found out. Holding my baby girl in my arms, I knew what lay ahead for her. It seemed unfair that it was my daughter who was afflicted. In many ways Hair Loss is more acceptable for boys because they can shave it off. I could only hope that she would deal with the condition better than I did.
As she grew up Evie quickly developed into a happy, fun loving child. Her dad used to take her swimming and she loved splashing in the water. I started to get fed up of always sitting by the side so I even managed to put on a swimming cap and jump in myself. Evie never wanted to wear a wig. She’d say she didn’t want it to hold her back, like it did me. So, unlike her mum, she chose to face the world bald, something I am so proud of. Only once, at a fancy dress party she went as a punk and wore a costume hair piece. ‘Mum I don’t know how you can stand it,’ she said.
I never knew how hard it would be having a daughter who suffers Hair Loss like me. Wherever we went, nosey people would stop and stare. Many would make comments out loud. Once I was paying for my shopping at a check out when one said: ‘Poor thing is she having treatment for cancer?’ People always assumed my perfectly healthy little girl was dying of a terminal disease. It made me so sad and angry. In our society being bald hold such a stigma. People think you don’t mind tactless comments. Even at the dentist I was asked: ‘Is she on medication?’ with sympathetic looks.
After years of comments I admit I started answering back. Sometimes I’d stop myself and ask people if they knew it was rude to stare. The way Evie dealt with her illness was an inspiration to me. I’d often stand and watch by our back patio doors her play in the garden, even in the rain. I’ve always wanted to run outside in the pouring rain myself but with a wig on that’s impossible. As she grew up Evie managed to grow a little fringe at the front of her head. She’d coped so well all through primary school as she’d known her friends for years.
When senior school was approaching I worried about how older, teenage kids would react. Then I met a lady, through my work as a civil servant, who suggested Evie tried hair weaving. This meant her tiny bit of hair could be attached with longer extensions. We tried it out when Evie was about to start her new school. It meant she always had her hair up, but gave her extra confidence. Despite having this condition Evie always threw herself into life in a way I felt I couldn’t. She loves dancing and has had lead roles in her school plays. Once she danced on stage in front of 200 people at the Solihull Library show. She had the nerve to do things I never did.
I finally learnt to swim at the age of 40. Seeing Evie made me think how I was missing out. I wanted to prove to her and myself I could do it. Of course I kept my swimming cap on though.
Being bald has probably brought us closer. I understand what Evie has gone through and yet at the same time she has inspired me. I first heard about White Cliff’s Hair System when my sister rang me. She read about it in a magazine on holiday. ‘It’s just like real hair,’ she said. ‘It stays on your head even when you swim.’ It sounded thrilling and just what we needed. Now we can’t wait to get our own systems in place.
Evie: From the start I knew I was just like my mum, without any hair and it helped us grow even closer. It never stopped me from doing anything and partly because my mum always encouraged me so much. I didn’t want to be as nervous as her so I try and not think about my hair and instead just do things. I play hockey, go dancing and love swimming. I just ignore people who stare at me. Only one person has ever said horrible things to me at school. I’ve never met another person with the same condition as me and my mum, so our bond is extra special.
Now with our WHITE CLIFFS Hair Systems we cannot wait to go swimming with it on.
Irene: I no longer have to put an old one on before bed, I sleep in it and wake up as normal … I cannot believe the change it has made in my life. To be honest it was hard styling it and it will take me a while to get the hang of it because I’ve never really had to do it, but I have Evie and we help each other.
Evie: I love it and cannot stop touching it. I feel so much confident in it and cannot wait to go out and buy some straightners!