WEST MIDLANDS UKIP MEP James Carver is supporting a campaign to raise awareness of a rare chronic disease which claimed the life of his first wife Carmen.

She died in 2009 from scleroderma, a long-term autoimmune disease that is caused by the immune system attacking the connective tissue under the skin and around internal organs and blood vessels. There is currently no cure.

Worcestershire-based Mr Carver is determined to ensure other sufferers receive crucial early diagnosis and that money is raised for research to find a cure.

There are two main types of scleroderma - localised scleroderma which is the mildest form of the illness and just affects the skin, and systemic sclerosis, which may affect blood circulation and internal organs as well as the skin.

There are around 2.5 million sufferers worldwide, with 12,000 people currently living with the disease in the UK. Scleroderma is four times more common in women than men and the onset is most frequent in people aged 25 to 55 but it can affect individuals of any age.

Hardening of the skin is one of the first noticeable symptoms, caused by the body producing too much collagen, which can affect the skin, joints, tendons and internal organs. It causes scarring and stops the affected parts of the body from functioning normally.

June is Scleroderma Awareness Month and Thursday June 29 is World Scleroderma Day. Mr Carver said: “Losing a loved one at such a young age, who bravely battled this illness on a daily basis has, without doubt, proved to be the most defining moment of my life, and I am determined to do all that I can to help give patients and their loved ones the best opportunity to beat this wicked disease. Only by raising awareness and funding can we hope to find a cure.”

“Awareness raising – and fundraising – has been going on all month ahead of Thursday’s World Scleroderma Day and I hope that telling my and Carmen’s story will go some way towards helping spread the message more widely.”

Following his wife’s death, at the age of 42, Mr Carver made a lifetime commitment to raising money and awareness for the Scleroderma Society – recently renamed Scleroderma and Raynauds UK – and in 2012 he completed a personal goal of running the London Marathon, raising more than £6,000 for the cause so close to his heart.

Speaking in the European Parliament this month, Mr Carver paid tribute to the work of the charity and that of the Federation of European Scleroderma Associations in supporting patients and their loved ones.

He said early diagnosis can have huge benefits for sufferers and urged fellow MEPs to raise awareness about the disease in their member states.

Mr Carver had previously staged an awareness-raising event in the European Parliament in 2015, with medical experts and scleroderma patients speaking to other Euro MPs.

The UK-based charity rebranded to acknowledge Raynaud’s Syndrome, which is also often suffered by scleroderma patients. It causes hardening of the skin, swelling of the hands and feet, joint pain and stiffness and blood vessel damage leading to a physical over-reaction to cold or stress.

Symptoms of scleroderma vary for each person, and the severity depends greatly on which parts of the body are affected.

Systemic sclerosis is a type of scleroderma which affects the internal organs as well as the skin. The heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system can all be involved.

More information about the disease can be found online at www.sruk.co.uk