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Libby Smith should be looking forward to her school prom and preparing to take her GCSEs.

Instead, she feels "trapped" in the body of an 80-year-old and needs two knee cap replacements, thanks to a rare form of juvenile arthritis

According to YorkshireLive , the 16-year-old is constantly in pain from juvenile idiopathic arthritis (JIA), so bad that she has considered undergoing a risky bone marrow transplant in an attempt to 're-set' her immune system.

The condition targets Libby's cartilage, making even the simplest of tasks difficult to complete.

Walking, cutting up food and even brushing her hair are now impossible for Libby- she has to rely on her parents Diane Smith, 40, and Adrian Smith, 45, for help.

JIA is an inflammation of one or more joints in a child under the age of 16 years.

Juvenile means that the child was under 16 when the arthritis started, idiopathic means there is no other explanation for the inflammation in their joints and arthritis means that there is swelling and inflammation in the childs joints.

The child's immune system becomes over-active or poorly controlled.

As a result, it starts to attack the lining of the joint which causes inflammation and swelling. Infection can also be a trigger.

Can be more likely in children with a family history of rheumatoid arthritis or lupus.

Information taken from National Rheumatoid Arthritis Society

The teen wanted to become a professional dancer or swimmer, but her dreams were snatched from her when she was first diagnosed with the condition at just 5 years old.

Libby has suffered with mobility issues, having to undergo a lot of surgeries in her lifetime- including a fusion surgery on her right foot, and having an Ilizarov leg brace fitted; she also needs two knee replacements.

Libby is forced to hobble around her home, 'shuffle' downstairs on her bum and has to go out in a wheelchair as her wrists are too weak to use crutches.

The teen, from West Yorkshire, said: "It feels like I'm trapped in an older person's body, I feel like I'm in a hole that I can't get out of.

"I'm waiting for operations to make life easier that are associated more with grandparents - people in their 70s and 80s - rather than my own age.

"I'm upset all the time and I struggle to sleep at night.It's like constant shooting pains that burn, I just want the knee replacement done as soon as possible.

"I've not completed a single day of highschool and struggled with friends as I think people just don't understand.

"It's been really isolating not going to school.It's been frustrating going through this, you get your hopes up that people with JIA grow out of it but I think it just got worse."

Some people with JIA grow out of' the condition, but Libby has not been so lucky and her health continues to deteriorate.

Mum, Diane, says watching Libby's health continue to deteriorate is "breaking her heart" and she turned to social media for answers and support.

The diet consultant said that Libby had always complained of aching legs but only got a official diagnosis in 2011 after Adrian insisted on taking her to A&E when the tot avoided putting any weight on her right leg.

Diane said: "Libby was absolutely fine as a baby but as she got older she would say to me 'I can't walk' and would say her legs were aching all the time.

"She would complain all the time, we just thought she was downright lazy.

"As she was our first child we didn't have anything to compare her to, we just thought that she had little legs and was tired.

"One Sunday when she was five she hopped round on her left leg all day. Adrian told me to pack a bag and that he was taking her to A&E.

"I told him we couldn't take her there as it wasn't an accident or an emergency but he insisted if she couldn't walk he was taking her."

After a week of blood tests and x-rays, Libby finally received her diagnosis of JIA.

Diane said: "We were told it was a childhood condition that she should grow out of in her teens as she goes through puberty.

"They said if she didn't grow out of it then she would probably grow out of it when she had her first baby because things change with hormones.

"She was measured up for crutches, a wheelchair and a walking frame and had physio organised.

"The only history we have of it in our family is with older people, like everyone's family, nan and grandad had it a bit.

"Felicity (Libby's 10-year-old sister) is the complete opposite of Libby, she's the most active child in the country so we knew there was no problem there.

"If we'd had Felicity first and knew how active a child should be, we would have realised there was something wrong with Libby a lot sooner."

Libby's arthritis only worsened as she got older, leaving her unable to attend secondary school- instead, she battled through the pain to study with tutors at home.

Diane said: "She missed her whole high school life because she was so poorly - since leaving junior school her condition got worse and worse.

"We've had English and maths tutors at home but some days I'd have to turn the tutor round at the door and say she wasn't well enough.

"Some days she would manage an hour and other days she could do two, but not very often."

The teen's physical limitations and absence from school means Libby cannot sit her GCSEs.

However, Diane and business owner Adrian encouraged her passion for make-up and she set up her own make-up artist business last year.

Diane said: "Libby's not able to sit her GCSEs as she's missed far too much school because she just wasn't well enough.

"As parents we've been realistic and thought about what she would be able to do as an adult.

"Libby is really good at make-up artist work so we set up a business for her and recently swapped her English and maths tutors for make-up artist tutors.

"She's had a few clients but since Christmas she's just not been well enough, so we've had to put the business on hold."

Libby is on a lot of medication and has undergone a lot of surgeries to combat her painful symptoms- but none of the treatments appear to be working in the long term.

Business owner, Adrian said: "The consultants describe Libby as 'not following the script'.

"Instead of her body accepting medicines that have been successful for other people, it rejects it.

"Libby was looking into a bone marrow transplant to re-set her immune system not so long ago because they were running out of ideas as far as treating it with normal medications.

"The doctors were very blunt about the risks and said she might not make it, there was a substantial percentage that we'd lose her.

"It wasn't because of the procedure, but because of the bacterial medication she's on that increases the risk of her not coming through the re-setting of her immune system.

"We were on the last family of medicines before Christmas and it started working so she decided she wouldn't go ahead with it."

The family are desperately searching for a medicine or treatment that can help Libby's condition.

Adrian said: "This condition is something you associate with someone who's a lot older - she's having to face issues that 80-year-olds face at the age of 16.

"She hobbles around the house, going up and down stairs she does on her bum."When she walks it's more like a shuffle, a move that older people do, and when we go out she has to use the wheelchair.

"She used to be able to brush her hair but we have to do it now, we also cut her meat up for her before she can eat.

"All these other kids her age are off on school trips and going out with friends after school but Libby can't do that.

"As parents we try and do what we can to spend time with her and make her laugh.

"I've said all along that if there was something overseas I would pay for it, we just want answers.

"Sod the funding, if it makes me bankrupt, I'll pay for it."

Continue reading here:
Teenager with rare juvenile arthritis 'feels trapped' in the body of an 80-year-old - Gloucestershire Live

This entry was posted on March 8, 2020 at 10:42 am and is filed under Arthritis. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |