A MONMOUTHSHIRE woman says she is “desperate” for help after being refused funding to get treatment for a rare illness she suffers.

It leaves her in extreme pain and sometimes unable to leave her bed for months at a time.

Sarah Letton, 37, who lives near Abergavenny, was diagnosed with Ehlers-Danlos Syndrome at the age of 24, an inheritable connective tissue disorder.

The illness causes her to suffer from problems including hypermobility, painful joints and heart palpitations.

Although Ms Letton was able to manage the illness, which she has had from birth, her condition became progressively worse in April 2006, when her ankle popped out as she stood on an unstable piece of wood.

She says she ended up being in bed for 18 months, suffering pain in her pelvis. She was diagnosed with inflammatory condition osteitis pubis in August 2006.

She said: “When it’s really bad it feels as if there is a baby’s head stuck in my pelvis. Sometimes I can’t move my arms, head or toes.

I can be in bed for eight months with it.”

The pelvic condition also resulted in her having to undergo a termination in 2007, as doctors warned her it would be likely that both she and her child would lose their lives if she went through with the birth. This is something which Ms Letton says breaks her heart to this day.

On top of this she also suffers fromthree tarlov cysts at the base of her spine, which add to the pain.

Her son Henry Letton, nine, also suffers from Ehlers- Danlos Syndrome.

After years of suffering, Ms Letton managed to get funding of around £1,000 from the Welsh Health Specialised Services Committee to see an EDS specialist at St Mark’s Hospital, London.

The specialists recommended to Ms Letton that she go on a three-week hypermobility rehabilitation programme at the Royal National Orthopaedic Hospital, Middlesex, which would see her undergo a programme for EDS which includes intensive physiotherapy to get fitter and stronger.

Ms Letton says she has exhausted all other options and that the course is her “last chance” but she needs between £15,000 and £30,000 to attend.

Now, after applying to the Aneurin Bevan Health Board for funding, Ms Letton has found out from her neurologist that she has been refused.

She said: “I am just desperate now. This is my last chance.”

‘Not all the options have been exhausted’

AN ANEURIN Bevan Health Board spokesman said: “All individual patient funding requests are given consideration by a dedicated panel which includes mainly clinicians.

“Clear evidence is required that the treatment will benefit the patient and that the service is not available locally.

“Despite requests for clinical evidence from the treatment provider no evidence was forthcoming and it was also clear that not all local treatment options had been exhausted.

“We fully understand that sometimes patients are disappointed by the decision of the panel, and a review process is available in line with an all Wales policy,”

the spokesman said.