Welsh Government is Starting to Pay for EDS Treatment

Phoebe Bruce

Phoebe Bruce

It has been difficult in many countries, including the US, to get insurance and government agencies to pay for Ehlers-Danlos Syndrome treatment. Many doctors do not understand this disorder and most do not know how to treat this condition. This is a story of a successful result of a public appeal for a teenager with this rare condition which causes her limbs to dislocate She is now starting specialist treatment.

 

Phoebe Bruce, 17, from Hawarden, Flintshire, has Ehlers-Danlos syndrome, a genetic condition caused by a defect in the body’s protein collagen.

She was given an appointment with a specialist at Stanmore Hospital in London after the Welsh government agreed funding for her care.

Her father Richard said: “This is what we have been fighting for”.

The family won funding for specialist consultations for the sixth-former after they made a public appeal in August.

Then, Phoebe was experiencing up to 18 painful dislocations a day and she had to go to A&E about 60 times for treatment.

But now, with intensive physiotherapy at the Countess of Chester hospital twice a week, Mr Bruce said that Phoebe suffered far fewer dislocations.

They are down to one or two a day and she is managing to a large extent to put them back herself, he explained.

“At the moment she seems to be improving slowly but surely. She is aching quite a lot but when her joints do dislocate she is managing to put then back in.”

On Monday she had an appointment with a rheumatologist who specialises in Ehlers-Danlos syndrome at Stanmore.

Mr Bruce said as well as learning more about the condition, they are hoping that this will lead to a longer stay at the hospital to help Phoebe manage it even better.

It is the second consultation her family have had since they won the funding for private treatment from the Welsh government.”

Some of these medical funding battles take a long time to win. But is is worth the effort since we are making progress one case at a time.

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