Dystonia patients' 'distress' over cancelled Botox clinics

Dystonia patients' 'distress' over cancelled Botox clinics
From BBC - February 10, 2018

A support group for an incurable neurological condition said a "perfect storm is brewing" over "mass cancellations" of appointments.

Dystonia causes uncontrollable muscle spasms and is commonly treated with Botox injections which paralyse nerve connections.

They are described as a "lifeline" to people who would otherwise be left in chronic pain.

But patients are having treatments delayed at Wales' largest hospital.

Cardiff and Vale university health board apologised saying it has been "challenging to deliver the service" at the University of Wales (UHW), Cardiff.

What is dystonia?

Source: NHS

Graham Findlay, 60, from Cardiff, founded the support group Dystonia Cymru 10 years ago, having had the condition all of his life.

He described it as his brain sending the "wrong signals" to the muscles in his neck and shoulders which causes spasms and affects his speech.

Botox has to be injected every two or three months as the nerve cells re-grow, and "if there's a gap, the symptoms rapidly return".

"They can be very distressing and painful to patients," he said.


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