Mother & Two Daughters Suffer Lipodystropy Ageing Disease Known As 'Reverse Benjamin Button Syndrome'

A mother and her two daughters have spoken out about the ageing disease all three of them suffer from.

Tracey Gibson, 41, Zara Hartshorn, 15 and Jolene Hardy, 23 all have an incurable genetic condition known as Lipodystropy, which causes fatty tissue beneath the surface of the skin to disintegrate and skin to age prematurely.

As a result of the illness, sometimes called Reverse Benjamin Button Syndrome after the film which sees Brad Pitt age in reverse, the trio all look older than their years.

Tracey Gibson, 41, Zara Hartshorn, 15 and Jolene Hardy, 23, all have an incurable genetic condition known as Lipodystrophy

Tracey, of Rotherham, South Yorksire, explained: "Each day I look in the mirror and see the face of a woman twice my age looking back.

"I'm fed up of looking like this and it's getting worse the older I get. I'm not old but I feel twice my age.

"I've had abuse for the way I look my whole life - now I worry what the future holds for my daughters."

Zara is no stranger to the confusion and embarrassment her altered appearance can cause.

At the age of 11 she was handed a lesson plan at school by a teacher who thought she was also a teacher, and she is often refused a child's ticket on transport and at the cinema.

She said: "It makes me really angry sometimes and it can be really embarrassing.

"I remember once it was my first week of school and I was really nervous. I walked into the room and the teacher handed me a lesson plan. I said, 'I'm not a teacher, I'm a pupil'.

"I've never felt so on the spot in my life, I just wanted to die. It didn't help that it happened in front of everyone. The same thing happened a year later when I changed teachers."

Zara, just 15, has been hit hardest with the illness

Like Zara, Jolene, could pass for a woman twenty years her senior.

Constantly mistaken for much older women, they have all suffered at the hands of bullies throughout their lives.

Tracey, a mother-of-seven, said: "Kids used to call me 'monkey face' and 'granny' and I was crippled with self-esteem issues for years.

"Growing up was particularly hard for me because we didn't know where the condition came from. Other children didn't want to play with me and I knew I was different and had some sort of illness.

"Later in life I became volatile and would lash out at people. The only men who were interested in me were a lot older than me and my first boyfriend, when I was 16, was in his 30s."

But Tracey says these tough experiences were nothing compared to the guilt she felt when she realised she had passed the condition onto her own children.

She said: "I was heartbroken when I found out Jolene had got it. I felt enormous guilt and total anger.

"I knew I had created someone who would have to go the same crap that I did. I just hoped it would be different for her.

"I remember when she was four, she came home in tears and asked, 'am I ugly, Mummy?'. My heart broke. I said, 'you will always be beautiful, no matter what anyone says.'

Tracey with her daughters and husband Lawrence Gibson

"But even now she finds it hard to put on weight, which makes her look even more gaunt. People used to shout 'smackhead' at her in the street. Now she eats as much as she can to put on weight so she looks less wrinkly."

However, Tracey says her youngest child, Zara, has been hit hardest with the illness, suffering symptoms much more exaggerated than her sister.

She said: "I'd seen the same symptoms with Jolene, the loose skin, hollow face and wrinkles, but never so severe in a young baby.

"Zara started to age quicker than her sister had and was being mistaken for an adult when she was barely a teenager."

Like Jolene, six-stone Zara finds it hard to put on weight, despite eating the same amount as the other girls in her family.

The year 10 pupil says she would like to go into beauty therapy when she leaves school next year.

She said: "Growing with Lipodystrophy has been really hard. Children started being cruel to me when I was at primary school, calling me 'baggy face' and 'granny', so I used to just keep to myself.

"I've been physically assaulted at school before just because of how I look so Mum took me out of school for a term when I was ten because the bullying got so bad.

"It wasn't until I started secondary school that I found a group of friends who accepted me for who I was, not how I looked.

"But outside of school some people still find it hard to believe how old I am, and it can be really embarrassing.

"Once on a bus I was refused a child's ticket in front of everyone. The driver told me to pull the other one when I told him I was a child. I went red and got off the bus and walked home.

"It's impossible to get a child's ticket at the cinema and when I wear my school uniform people think I'm in fancy dress.

"I used to wear lots of make-up to try and cover up my skin but these days I'm more accepting of myself. I think there's people out there who are worse looking than I am.

"One good thing about the condition is neither Jolene, my mum or me have ever had a spot or skin blemish. We've all got very smooth skin of our faces.

"And I can get served for cigarettes and alcohol - if I wanted."

While accelerated aging might make many girls her age shy away from boys, Zara said she has no trouble getting attention.

She said: "I've had a few boyfriends and they all tell me they don't care how I look, they like me for my personality.

"Mum has raised all her kids to speak their minds and be confident about who they are. With all of us, what you see is what you get.

"I still do everything that normal 15-year-olds do and I try to to let anything get me down.

"Of course I still sometimes get upset when people put me on the spot. Recently someone told me they thought I looked like I was 30 and I got really angry.

"Another time a guy asked if Jolene was my mum. I said, 'she's my sister you idiot,' but Jolene was really upset."

While Zara's feisty attitude helps her deflect hurtful comments, Tracey found another way to cope as she grew up.

She said: "The taunts and put downs really got to me and I started drinking to blot out the pain. I fell into one abusive relationship after another because I couldn't stick up for myself.

"But then I look at Jolene and Zara and I am so proud of the way they handle themselves."

In March Tracey, who is also mother to Gareth 24, Michael, 21, Tommy, 19, Rosie, 20 and Chloe, 16, married her partner of six years Lawrence Gibson, 62.

Last August Lawrence had a stroke and was rushed to hospital where it was found he was suffering with cancer of the lung and emphysema.

Now bedbound, Tracey is his full-time carer.

She said: "We're hoping he's still got a few good years ahead of him, he's made me so happy.

"We are very close as a family. I know my kids don't blame me for having Lipodystrophy, just as I don't blame my parents."

There are fewer than 30 people who suffer from Lipodystrophy in the UK. In some cases the illness can drastically shorten life expectancy.

Tracey said: "I would like to find a cure or treatment that works. I had a facelift at age 13, but the results didn't last long.

"The symptoms get worse as you get older. I don't want Jolene and Zara to suffer the way I have.

"As I get older I feel it more and more. I never leave the house without wearing sleeves.

"Nobody seems to wanted to help us. I've asked about getting filler but even the specialist advice me on treatment until they know what's causing it.

"Some days I feel like giving up, but I can't do that while my kids need me."

As well as aging the skin, Lipodystrophy causes bones to weaken and degenerate quickly.

Tracey now takes 400mg Tramadol each day to control her pain and Zara is concerned about the effect her condition is having on her teeth.

Zara said: "My teeth seem to be really weak and even though I brush them regularly they aren't in good condition.

"I've lost four teeth already, two of them at the front. It's starting to make me very self-conscious and I don't like to smile with my mouth open."

Two years ago Tracey took Zara to Japan for collagen injections to try to alleviate her symptoms.

After initially smoothing the lines from her face the implant broke down leaving Zara with uneven lumps protruding from her face.

Zara said: "I was really excited about prospect of having collagen because I thought I might be able to chance my appearance.

"When it went wrong I was gutted. I thought it might have been the answer. In the future I would like to have a face life to see if I can get rid of the skin under my chin and wrinkles around my eyes."

Tracey added: "In my experience the abuse doesn't go away. Not long ago a bloke called me Skeletor in the pub. I said to him, "I've had years of this, is that the best you've got?"

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