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John Cabrera

Grayshott, Surrey
United Kingdom

[John started losing his hair in his late 20s.  Six months after the hair loss began, he had lost all of his hair (from head to toe).  John has a condition called alopecia universalis.  He candidly answered these questions for us so you will know more about this condition.  Anybody who unaccountably starts to lose their hair should see their doctor immediately.  Nothing John says here should be thought of as medical advice.  Click here to read John's biographical interview.]

What is alopecia?

Alopecia is an autoimmune condition under which the body makes a mistake and identifies hair as if it were an invading agent, like a virus.  The body retains the ability to grow hair but the immune system intervenes and prevents the hair from developing.  Other autoimmune conditions can be very serious indeed.  The list is long and includes multiple sclerosis, rheumatoid arthritis, scleroderma, etc.

What causes alopecia?

Researchers have not really hit on the cause or causes of alopecia.  Some evidence suggests that alopecia has a genetic component.  I have personal evidence of this.  My maternal grandmother suffered from occasional alopecia areata, as does my brother.  Neither of my children has shown any signs of the condition (believe me, I watch).

Many people think that major psychological trauma can trigger alopecia.  However, most doctors say there is not enough evidence to warrant this assertion.  But, I think there is a connection with psychological trauma.  I know a man whose brother was a bomb disposal expert in the British Army.  One day, in Northern Ireland, his brother was blown up while trying to disable a terrorist's bomb.  My friend lost all his hair within a month of receiving the news of his brother's death.  Duncan Goodhew, whom I have met, is a British Olympic swimming gold medal winner.  Duncan lost all his hair, aged eleven, shortly after he fell from a tree.  It is hard to believe that alopecia, in these cases, was purely coincidental.

Is there a cure?

There is no effective treatment.  Some doctors may offer steroid injections but these have nasty side effects and excessive medication of this kind can prove fatal.  I have heard of people rubbing solutions made from primulas into their skin.  This will often cause an unpleasant rash but there is evidence that hair starts to re-grow.  Nevertheless, it seems not to be a permanent cure and involves great discomfort.

There are also alternative therapies.  I am sceptical of alternative medicine but this has not stopped me trying acupuncture, homeopathy and ancient Chinese medicine.  While I believe some people can be helped by alternative treatments, they did not work for me.

Do men who go bald have alopecia?

Alopecia is different from male-pattern baldness.  This affects most men at some stage in their lives and to varying degrees.  It is so common that it cannot be regarded as a disease or an illness.  Heredity plays an important part in determining an individual's propensity to male-pattern baldness.  Some treatments are available (e.g. Rogaine and Propecia) and I have heard that they can work on some forms of alopecia.  The problem with these products is that symptoms return when treatment is stopped.  There may also be side effects.  I have not experimented with these products.

Both males and females may be affected by alopecia and it can develop at any age.  I understand it is less common in people who are over their thirties.  I don't want to mislead with muddled statistics but it may be reassuring to know that alopecia is quite rare.

Are there different kinds of alopecia?

Alopecia can take three forms:

Alopecia Areata - In this condition, patches of hair can be lost on the scalp or anywhere else that hair grows (including eyebrows, eyelashes, nose and body hair).  Hair usually grows back after a few months.  In people with dark hair, the early re-growth is often fair in colour.  The usual colour returns soon after re-growth.

Alopecia Totalis - In this variation, hair loss on the scalp is complete, often including eyebrows, eyelashes and facial hair.  The rest of the body is largely unaffected.  Chances of re-growth are not as good as for alopecia areata.

Alopecia Universalis - Hair loss that affects the entire body.  Chances of re-growth are low though there are reported cases of partial and even complete remission.

How did alopecia affect your life?  Did people treat you different?  Did it start to fall out all at once or was it gradual?

When I first started to lose my hair, I found it hard to accept.  All people have a body image (the way they think they look) and it takes a long time to adjust that image, even after a quick and radical change in appearance.  My hair loss was complete after six months.  During those months, I used to comb the thinning strands of my hair as if I had lost none.  If people did not see me for a week, they would look shocked at the rapid change in my appearance.  My brother said I looked like I was physically falling apart.  One day, I picked up my girlfriend for the weekend (I had not seen her for a week) and, on seeing me, she burst into tears.  In the end I shaved off the last bits of hair -- an act of catharsis.  For a long time after, I hated to see myself in a mirror.  I refused to let people take my photograph.  I wore a discreet hat everywhere, even in the summer.

However, as time went on (quite a lot of time), I became more comfortable with my new appearance.  My girlfriend became my fiancée and then (and now) my wife.  My friends got used to it.  My mother stopped fussing.  My dad said I looked pretty good.  I stopped wearing the hat on warm days.  I still use a hat in the winter, but nothing discreet.  I wear Australian bush hats, Stetsons, fedoras and baseball caps (good for sailing).  I let people take my photograph.  The only time I feel slightly nervous is when I meet someone I have not seen for a long time.  But even that is not particularly hard.

There is a funny side to this.  One of my customers at Citibank was Wella Hair Products.  I drove out to meet their treasurer one day.  It was a cold day and, after I got out of the car, I put on my hat and coat.  I walked into the reception area.  A woman sat behind the reception desk.  Behind her was a big company logo and lots of pictures of women with beautiful shiny flowing hair.  I don't know what possessed me but, as I approached the desk, I took off my hat abruptly and said to the woman, "I've come to make a complaint!"  I thought she would laugh.  But she didn't.  A look of absolute horror rushed across her face and she reached for the telephone.  At that point I said, "No, no, it's a joke!"  She put the 'phone down and I managed to pacify her and explain that I was there on business.  You know when you've said the wrong thing.  She was not amused.

What advice do you have for children who suffer from alopecia?

My heart goes out to anyone who has recently, in their lives, had to accept that they have severe alopecia.  It is also hard for friends and family, especially parents.  I used to think it must be worse for girls than boys.  But I now think the suffering is probably the same for both sexes.

If you can do it, the best motto to apply is, "If it doesn't kill you, it will make you stronger."  In the case of alopecia this really is true.  At first, you will feel dreadful but it might help to remember that alopecia won't kill you.  Step out of yourself for a moment; you may realise your suffering (if alopecia is one of only a few problems) is minimal compared to that of those who face far more debilitating, disfiguring or even fatal conditions.  You are not selfish if you feel wretched but, if you can muster some courage, you will triumph over the depression that alopecia brings and find yourself able to face up to much more than you might have thought possible.  Bravery breeds admiration.

Your good friends will not desert you.

And, if all else fails, think of me as a kind of Bobby McFerrin -- write to me, I'll make you happy!

Here's a little song I wrote
You might want to sing it note-for-note
Don't worry, be happy
In every life we have some trouble
But when you worry, you make it double
Don't worry, be happy   Don't worry, be happy now

~ Bobby McFerrin - Don't Worry, Be Happy

What suggestions do you have for children who know other children who suffer from alopecia?

Don't be afraid.  Try to find out something about alopecia and imagine yourself in that person's position.  If I may be permitted a cliché, "a problem shared is a problem halved".

We should remember alopecia is a cosmetic problem.  It must be put into perspective.  It changes your life but it really is no more than one of the many things that will happen to you in your life and form the person you are.

The best website I know of, if you want to find out more, belongs to the National Alopecia Areata Foundation:
http://www.naaf.org/site/PageServer?pagename=stories_photos_children

Read John's biographical interview

- 14 February 2003



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Last Updated:
8 January 2015
 

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