Shropshire Star

Get tested, says MEP, as he speaks about wife's death

James Carver talks about his first wife's last months, as she suffered with a little-known condition.

Published
James Carver

“Carmen bravely faced a lot of painful debilitating effects," says Mr Carver.

"She fought so hard not to let it take over and to lead a fulfilled and happy life, despite all that she had to endure."

It is 10 years since Carmen died at the age of 42 from the rare autoimmune disease scleroderma, and Mr Carver – an MEP for Shropshire and the West Midlands – hopes that by sharing his experience now, he will be able to minimise the suffering others go through in future.

While scleroderma is a rare condition – there are thought to be about 19,000 people with the more serious form, systemic scleroderma, in the UK – it often stems from Raynaud's syndrome, which is thought to affect 10 million people a year in the UK alone.

Raynaud's, which is caused by poor blood circulation, can result in a colour change in the extremities such as hands or feet, numbness, and a tingling pain such as pins and needles.

Mr Carver is now urging people to take an online test to see if they could be suffering from Raynaud's.

"Carmen died from the effects of scleroderma, since when I have done what I can to raise awareness of this dreadful disease and of Raynaud's, which can be an early sign of it."

Mr Carver hopes that by encouraging an early diagnosis, the condition can be better managed and suffering kept to a minimum.

“I hope that talking about Carmen and her illness will go some way towards spreading the message more widely," he says.

"I want nothing more than that other sufferers can get the best opportunity to beat this terrible disease."

The charity Scleroderma & Raynaud’s UK is now running an online test which will indicate if somebody is likely to be suffering with the condition.

Mr Carver, who raised £6,000 for the charity by running the London Marathon, says the charity provides a lifeline to those affected by the illnesses.

“I hope to do more fundraising in the future, after Brexit, but for now I’m able to use my position as an MEP to speak out and help raise awareness,” he says.

Raynaud’s causes hands and feet to become so cold they turn blue or purple and then red, go numb, tingly or cause pain.

It can make simple tasks like fastening clothing, writing or preparing meals, extremely difficult. It can also affect other parts of the body such as the ears, nose and lips, with attacks lasting from a few minutes up to several hours.

Mr Carver says anyone who thinks they have the symptoms should take the test on the webpage sruk.co.uk/testme so they can access the support and advice they may need.

He adds: "Following the test, which takes less than a minute to complete, information and advice is then provided to those who may have Raynaud's on how best to manage its effects.

“It also allows those with underlying conditions to be screened for autoimmune conditions regularly, assisting in early diagnosis and allowing prompt treatment, which will help them enormously.”