When Catherine Townsend started to lose patches of hair when she was just five years old, it was the start of a long, often isolating, journey with alopecia.
But as she nears her 40th birthday, there are no signs of any self-consciousness or unhappiness.
She has learned to love and embrace her baldness and has finally come to terms with the fact it’s unlikely her hair will ever grow back.
She’s used to the odd stare, and comments from people who assume she is sick, but Catherine, who works for the local authority, says you can live a normal life without hair.
“I was about five when it first started. I would have patches of hair falling out. I can remember my mum taking me to the GP and then a dermatologist and they said that worrying could make the condition worse but I wasn’t worried about anything. I was only five.
“It continued off and on for years. I had quite thick brunette hair, in an old-fashioned basin cut but it would come out in patches and as I got older I just remember feeling really isolated because I just wanted to look like everybody else. I lost patches at various times throughout my teens and then again when I was in the second year of a law degree at Cardiff University it was particularly bad. The hair would grow back, sometimes different colours, so I’d have brown, mixed with blonde or red streaks.
“What was the hardest was that I never knew if it was going to fall out again and I think that was really difficult. It was like being in limbo. I had a condition called alopecia areata, which meant I lost it in patches and that used to give me some hope that it might one day stop falling out all together.”
But two years ago, Catherine started to lose much more hair and noticed it wasn’t growing back. She said: “Now I have alopecia universalis, which means that I have no hair whatsoever and it’s not likely to ever grow back. I started wearing a wig but I found them quite itchy and hot and it took about 18 months to build up the courage to actually go out without it.
“It was easier to do that in a public place, where no-one knew me, rather than go somewhere where I’d see lots of people who had known me with hair. I know other people who suffer from alopecia prefer to wear a wig and that’s absolutely fine. It should be whatever makes you feel comfortable.
“Now I’ve accepted that my hair will never grow back, it’s actually quite liberating. I’ve chosen to embrace my baldness, not hide from it, and now, with my 40th birthday in September I’m probably the most confident I’ve ever been.”
During the years of patchy hair loss, Catherine, who has a 15-year-old daughter, tried various methods to restore hair growth, including painful steroid treatment but none really worked.
And when she went to a dermatologist 18 months ago, and he said it was unlikely her hair would ever grow back, she was almost relieved.
“For many years my identity was defined by negative experiences I had of growing up having alopecia during childhood. How other people reacted to the alopecia defined how I felt about myself for a very long time.
“Fast forward to the present day, and I never imagined that I’d have the confidence to maintain a normal life without hair and to have come through the experience with a positive attitude to living with alopecia.
“I was told during that hospital consultation I shouldn’t expect my hair to grow back. I soon realised that there was a real possibility I could look like this until I’m collecting my pension. I have never been very competitive but I became very determined not to let it get the better of me as it had in the past.
“I knew there was nothing I could do to reverse the alopecia and realised instead I had to change how I felt about living with it and whether I was going to allow it to define my future as well as my past.
“I don’t believe there is a right or wrong way of coping with the change of appearance that alopecia brings. People are different and adopt different coping strategies. Some people cover their heads with wigs or headscarves and some don’t. I have done both and feel I have the freedom to choose.
“As a child I didn’t know anybody with alopecia and felt isolated growing up with this baffling condition. But as an adult, having met other people with alopecia, I am inspired by those who live with the effects of it.
“As the profile of alopecia continues to be raised, hopefully people who live with the condition will begin to feel less isolated and realise that although for a time it can feel like the bottom is falling out of your world, with appropriate help, encouragement and support, it doesn’t need to be the final word on your life.”
Hair loss can be a blow to confidence
- Alopecia is a hair-loss disease that affects men, women and children. The onset is often sudden, random and frequently recurrent.
- Although not damaging to physical health, alopecia can have severe effects on quality of life and emotional health through its impact on confidence and self-esteem.
- Information and support, however, can play a key role in long-term coping strategies.
- Alopecia affects approximately 1.7% of the population and men and women are equally affected. Around 25% of people affected have a family history of the condition.
- The exact cause isn’t known, although it’s generally agreed it’s a disease of the immune system. There is believed to be a genetic component in some cases and a possible link with stress.
- In alopecia, your immune system attacks the affected hair follicles by mistake. This halts hair growth (the anagen stage) and causes a move to resting (the telogen phase) where the hairs are then abruptly shed.
Support group bid to help other sufferers in Wales
Alopecia sufferer Gwennan Thomas, also from Cardiff, is hoping to set up a Welsh support group in conjunction with Alopecia UK.
Gwennan, who works at Cardiff University, said: “It is currently run by volunteers alone and relies heavily on donations in order to function. The major aim is now to drive the charity forward and begin to set up regional coordinator roles throughout the country to provide the much-needed support for this often life-changing and psychologically damaging condition.
“With a prevalence rate thought to be around 1.7%, Wales alone has approximately 52,000 people suffering with alopecia, who are being offered very little or no support at all. Being diagnosed with alopecia can be a lonely and desperate time and positive support from a charity like Alopecia UK can really help by providing information and support.”
She said further funding is needed to set up regional coordinator roles who would be responsible for organising support groups, one-to-one support sessions for those that do not yet have the confidence to sit in a group, provide information and support to GP surgeries and dermatology clinics, education programmes in schools to raise awareness, and coordinate fundraising and awareness campaigns. Gwennan is working with Alopecia UK to develop and trial a regional coordinator role in Cardiff/South Wales and is raising funds for Alopecia UK. She has found a team of 12 runners for the Cardiff 10K on September 8.
To donate, visit: Just Giving Alopecia Wales page . Alternatively you can text ‘AUKW89 £2/£5/£10’ to 70070 with the amount you wish to sponsor.