Hawarden teenager’s health ordeal means even a yawn can cause a dislocation

Aug 23 2012 by Steve Bagnall, Flintshire Chronicle

A 17-YEAR-OLD girl is begging for help to end her living health nightmare, which leaves her screaming in agony up to 18 times a day.

Phoebe Bruce, from Hawarden, has a rare genetic condition called Ehlers-Danlos syndrome which means her collagen is too weak to hold her limbs in place.

Even a yawn can cause one of her arms or legs to dislocate.

Every day of her young life, she has suffered at least one dislocation.

But suddenly earlier this year the attacks increased dramatically and now she is trapped in a daily nightmare of being rushed back and forth to A&E – sometimes waiting up to seven hours to be seen at a time and at other times having paramedics called to her home in Firbrook Avenue.

Her desperate parents Yvonne and Richard have been waiting a month for health bosses to decide whether to agree funding for her to get tested for treatment at a specialist private hospital in London.

Because she lives in Wales, it is up to the Welsh Health Specialised Services Committee to decide if she gets the cash.

In one of her worst attacks, the family tried to go to the Lake District for a holiday and Phoebe suffered 18 dislocations in one episode.

“I can put my other limbs back in,” she said. “But My arms are coming out every day and they are the ones that get stuck out – there’s no way I can move them.”

Phoebe inherited the condition from her dad Richard, who has the same genetic disorder, but in a much milder form.

She told how the condition, diagnosed a few months after birth, has led to her being all but confined to her own home.

“It’s as painful as a normal person getting a dislocation, but my limbs will also twist,” she said.

“But it has been getting more and more each day. I have a wheelchair to take me round school and teaching assistants with me.

“We recently went to Asda for a day trip, but then my shoulder and back went, and I couldn’t move, I was stuck in the middle of Asda and they had to call an ambulance and I ended up in A&E.

“But the paramedics are fantastic with me. They all know me.”

Phoebe, a talented artist, is trying to study for her A-levels in art, psychology and media, but has been massively hindered by having her arms in casts for a year.

But she has still managed to get two AS levels in art and media. Phoebe’s mum Yvonne first raised the question of whether she could get specialist treatment at the Hypermobility Unit at St John’s and St Elizabeth’s, about four months ago.

Phoebe is currently being treated at Alder Hey in Liverpool. Her case was referred to the WHSSC a month ago as no NHS trust can make a financial decision about a Welsh patient.

And her family have been counting the days ever since – with a decision expected today they are pleading with NHS bosses to help change her life.

Yvonne said: “We have been told they would accept her at the London hospital, but because she lived in Wales, she couldn’t be funded from England.

“The clinic in London will asses her to see what can be done, and they can train her to put her joints in herself, and pain management.”

There are also talks about the possibility of pioneering surgery on Phoebe to put in artificial strengthening into her limbs. But there are risks.

An Alder Hey spokeswoman said they couldn’t comment on individual cases.

Nobody was available from the WHSSC to comment.