‘I don’t have to spend time on my hair’

Craig Jenkins and his son Graham at HMS Sultan  Picture: PO Phot Nicola Harper

Families enjoy quality time at HMS Sultan fun day

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Ben Price is a boy who tends to stand out from the crowd.

He’s a talented football player, loves martial arts and is a hard-working student.

Ben Price with his mum and dad Becky and Stewart .''Picture: Sarah Standing (150861-8297)

Ben Price with his mum and dad Becky and Stewart .''Picture: Sarah Standing (150861-8297)

But it’s not his academic or sporting abilities which make him unusual. Ben, 12, has whole body alopecia – since the age of three he’s not had a single hair on his head or body.

Now he’s on a mission to support other people with the condition.

Ben, who lives in Horndean, says: ‘I would prefer to have hair, but at least when I wake up in the morning I don’t have to spend lots of time on it.

‘And when there is a whole school assembly, there are 2,000 people in the room and it’s always easy to spot me – in a good way.’

Ben when he started losing his hair at the age of three

Ben when he started losing his hair at the age of three

He adds: ‘There are a couple of people who take the mickey out of me, but my friends stand up for me.

‘There was one person in the group who called me a hero because I don’t wear a wig. She wears a headscarf and she wants to be brave and take it off but she is too scared.

‘She used to have really long hair and she hasn’t seen her family for years. I was the only person in the group who didn’t wear a wig. My mum doesn’t want me to.’

Mum Becky, 40, says they would support Ben whatever he chose to do.

She adds: ‘If he wanted to wear a wig we would support him. But a lot of people don’t pick up on it anyway. Because he isn’t insecure he doesn’t get bothered.’

And dad Stewart says: ‘Sometimes if you’re walking behind Ben you will hear people say “did you see that poor lad?”

‘There is a level of curiosity, but it could be a lot worse.’

Alopecia affects Ben in other ways too. He does not have nose hair so there is no awareness that his nose is running because he cannot feel it.

And because he does not have eye lashes there is no protection from dust.

If it rains or he sweats the water goes straight into his eyes because he does not have eyebrows. And he suffers from heat stroke when exposed to the sun for more than short periods of time.

At first there was no explanation for his hair falling out. But doctors now believe it is down to an auto-immune deficiency triggered when Ben was very young and suffered ear infections.

As well as fighting off the infections, his body also fought off hair follicles.

Others with the condition may also suffer from unexplained aching joints, particularly fingers, toes and elbows. This is related to the auto-immune disorder.

But it doesn’t stop Ben from playing football, judo and cycling with his friends. His schoolwork has never been affected by it.

Becky says: ‘I’m really proud of him. I would rather it never grew back than grew back and fell out again.

‘We’ve never hidden anything about his condition from Ben. We’ve always answered his questions honestly. And he’s always accepted it.

‘He has taken it on the shoulders and run with it.’

For the past few months Ben has been going to support groups run by Alopecia UK.

But the monthly Portsmouth group was at risk of closing because the leader left and the family feel it is so vital they have stepped in to run it.

On Sunday Ben undertook a 22-mile bike ride to raise enough money to keep it going.

‘The support group has really helped me’ says Ben.

‘Meeting other people with alopecia has taught me different ways of doing things, how to deal with it.

‘A lot of people wear wigs and hide it, but I just walk around normally because it’s all I know. I’ve had it since I was born.

‘Sometimes I get comments from people. I don’t mind if it’s little children and they’re with their mums and they say things like “why doesn’t that little boy have any hair?”

‘But if it’s someone older saying something not nice, I try to ignore it.’

Stewart is taking on the role of chairman of the group. He says it is vital to keep it going.

‘It’s a chance for people to talk about their experiences living with alopecia,’ says Stewart.

‘Ben is the person he is because of the alopecia. Some people deal with it half-way through their lives, but he has always had it.

‘There’s been no big change for him.’

The re-attendance at the group is low and Stewart says that is in part because people go along just to know they are not the only person with the condition.

He adds: ‘Female alopecia is hidden. Men have role models – Vin Diesel, Jason Statham and Jonjo Shelvey.

‘But for women it’s all about big hair and extensions.

A lot of them hide it. Going to a support group is probably one of the first times people can talk about how they deal with it, how it feels to be them and to let off a little bit of steam.

‘It’s a chance for them to be around people who understand how they feel.’

The next group meeting is May 21 at St Andrew’s Church Hall, Drayton, at 7.30pm.

Support group

On Sunday, Ben Price completed a 22-mile bike ride from his home in Horndean to the Spinnaker Tower and back again.

He is raising money to keep his alopecia support group in Portsmouth going.

His original fundraising target for hire of the hall at St Andrew’s Church, Drayton, was £60.

But news quickly spread, he smashed his target and is now on £900 – thanks in part to a big boost from footballer Jonjo Shelvey.

Jonjo, 23, plays for Swansea and has also had alopecia since he was a baby. When he heard Ben was raising money for the charity Alopecia UK, he donated £300 to the cause and said: ‘Good luck fella. Well done for doing it. I wish you all the best’.

It is not too late to make a donation. Go to justgiving.com/Stewart-Price.

Alopecia is not damaging to physical health, but can have severe effects on quality of life and emotional health through its impact on confidence and self-esteem.

Information and support can play a key role in long-term coping strategies.

The Hampshire group of Alopecia UK can be contacted by email on hampshire@alopeciaonline.org.uk or you can go to alopeciaonline.org.uk.