Misdiagnosis robbed Vicky of her childhood

Vicky Hemmingway who suffers from CMT.
Vicky Hemmingway who suffers from CMT.
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WHEN Vicky Hemingway was diagnosed with arthritis at the age of nine, she had to give up everything she and her family loved doing.

The daily swims before school and the days out playing hockey had to stop as she faced up to a life of inactivity and heavy medication.

Doctors told her the disease – usually endured by people decades older – had spread to her joints, into which she had to have steroids injected.

That diagnosis was wrong, and cost the business student eight years of her youth.

Vicky has a little-known disease called Charcot Marie Tooth (CMT) syndrome which, despite the deceptive name, attacks muscles and bones.

Now, aged 19, the Fairmilehead girl wants to make up for lost time after “wasting” much of her childhood, and to raise awareness of CMT, which is said to affect thousands of people across the UK, many of whom do not realise.

“It all started when I was at a friend’s house and my middle finger was sore,” said Vicky, who is now a student at Dundee University.

“After a week it hadn’t gone away and was swollen so I was taken to accident and emergency. That same day I was told I had arthritis.”

And while the former George Watson’s pupil is upbeat and outgoing about coping with the painful illness, the memory of changing her childhood activities is one thing that causes immense upset.

“I am angry about it, I will never be able to make up for that or get it back,” she said.

September is CMT awareness month, and it is knowledge of the condition among both the public and the medical profession – to reduce misdiagnosis – that needs to be improved.

It is a progressive illness for which there is no cure, with experts saying it “creeps up” on the victim rather than reducing their mobility quickly.

“There is always pain, but I’ve got used to that over time,” said Vicky. “I’ve got a cast on my foot just now because the muscle there was so weak I couldn’t move it at all – I would drag my foot when I walked.

“There’s no way of telling what will happen next, I’m just going to be positive, I’m so lucky to have such great support from my friends and family.

She added: “I’m hoping to set up my own beauty business when I finish university, and maybe spend some time in America next year.

“There’s no way I will let this hold me back. It’s got its challenges, but there are people out there dying of cancer.”

For more information, visit www.cmt.org.uk.

amorris@edinburghnews.com