Childhood Alopecia - A Personal Account

Jacqui O'Brien lost all her hair at the age of 10. Here she describes her experience.

"Just before the February half term holiday, my class teacher noticed that I had a few bald patches at the back of my head and made a mental note to tell my mother the next time that she saw her. She did not need to; over the half term holiday all the hair on my head and body fell out. I had spent the last days before the break stuffing the handfuls of hair that I found on my clothes into my desk and hoping that no-one noticed.

Over the course of that week, my hairbrush was full every day, my pillow covered in hair. Everything went, eyebrows, eyelashes, the lot. I went back to school with just a tiny quiff of hair at the front, just like a baby. After a few weeks that was gone too. I'd had a couple of bald patches the previous year but the hair had regrown. In fact I don't actually remember being particularly bothered about it at this point, as I just assumed it would grow back.

My GP looked at my head, asked me if I was ok, if I had any problems with my waterworks and referred me to the local hospital. In the meantime my mother bought me a wig. I was due to perform in a schools concert, and the reaction when I stood up bald at the rehearsal is one of those things you don't forget, a sort of silence then a wave of noise the conductor found hard to silence.

The doctor at the hospital, a skin specialist, looked at my head and gave me a prescription for two wigs which were to last me a year. I went to see him every six months. At this time it had just been discovered that the blood pressure drug Minoxidil caused hair regrowth in men suffering male pattern baldness. I was duly given a tub of cream to be rubbed on my head every night. My Father called it my 'fertilizer', but it had no effect at all. My parents massaged my scalp. I was given cortisone injections; a dozen at a time in my head, which hurts a lot trust me. My nails grew like mad but my hair did nothing.

Around the age of 13, when I began to think about my appearance and become interested in boys, was when I found being bald most upsetting. I wondered whether a boy would want to go out with someone who was bald. To my delight I have found that no man has ever been put off by my lack of hair. Contrary to the impression given in the media, men really do like you as you are. They can cope with imperfections! I'm now married with two children.

Finally after six fruitless years, my lovely doctor said he could not do anything for me, and to come back if it ever started to grow again. I haven't needed to make the appointment yet.

My Father, at great expense, then organised an appointment with a specialist in Harley Street. The specialist looked at my heavily ridged nails, and explained that this was linked to the Alopecia and meant that my hair was never going to grow back. So that was that. I have not tried any other cures for baldness.

Some of my friends at school told me later that when my hair first fell out their parents told them to stay away from me in case they 'caught' it. Well there was no mass outbreak of baldness at my school, and the children completely ignored what their parents had told them!

Since then I have not thought about my baldness as a problem. A wig is just one more thing to put on in the morning. I make wearing a wig as much fun as possible, by regularly changing styles and colours and having a couple of glamorous wigs for special occasions.

If my hair grew back now I would have to learn what to do with it. I have never washed my own hair and have never been to a hairdressers. My lack of hair has never stopped me doing anything (actually I was most relieved to get out of trampolining at school!). My family tend to have a 'get on with it' attitude to adversity, so sitting around feeling sorry for myself was never an option. I know some people find it much more traumatic. Perhaps I had just got used to the idea by the time I worried about my appearance

It is not known for sure why alopecia occurs. It is thought that the immune system attacks the hair follicles. In general, if the hair falls out before puberty as in my case it is unlikely to regrow. There are some treatments for partial hair loss, but as mine is complete, there is no treatment. I think the most important thing is to realise that alopecia does not stop you doing anything at all. Although trampolining could still be a challenge."

Some websites you might wish to look at:-

Hairline International is the website for the British alopecia sufferers support group.

National Alopecia Areata Foundation is a US Site which gives some well presented information about Alopecia.

Advice for long term wig wearers.

Choosing a Wig
If you are going to wear a wig all day, every day it will get worn out quickly. A reasonable quality acrylic fibre one, the sort that retails for about £100-£150 lasts about 3 months before it starts to look shabby. This is not much consolation if you can only get 2 per year on the NHS. Cheaper ones look bad much sooner. Choose a fairly short style, as the main wear occurs where the wig fibres rub on your clothes. If you choose a long one this requires extra brushing to keep it tidy so it will also wear quickly.

Wearing a Wig
Wigs tend to have Velcro, clips and adjustment straps which can all rub or dig into your head. You can get wig caps, but they are designed to pin to hair, but I have found you can use a stay-up stocking as a great wig cap. These usually have a silicone strip around the top to stop the stocking slipping down. This stops it from slipping under your wig and will stay in place all day. Cut most of the leg off leaving enough to cover your head. I think my head is average for a woman and I don't find it too tight, and they do loosen up after a few washes.

Always follow the washing instructions for a wig, and do keep it away from sources of heat. I once stood too close to a photographic light and ended up with a big frazzled clump of fibres. It was too much to cut off so that wig had to go in the bin.

Living with a Wig
If you have to wear a wig as a child may find there are people who will tease you, and think it is funny to pull your wig off. This is because you are different, not because you have done anything wrong. However it is bullying and should be dealt with just like any other form of bullying. The website for Childline has some good advice about how to deal with bullying, and why people bully.

Events in June 2021