Bassaleg mum raises cash for painful condition

11:20am Friday 6th may 2011

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JENNIFER Mein’s fright at being diagnosed with lupus after around three years of debilitating illness, soon gave way to determination to raise awareness of the disease.

despite symptoms including extreme tiredness, severe joint pain and sensitivity to sunlight, the Bassaleg mother-of-three has organised a fundraising event for charity Lupus UK.

And she hopes that by telling her story, she can also do something to help educate the wider public about lupus.

Lupus is the term for a group of incurable diseases in which the body’s immune system begins to attack itself. Around 50,000 people UK-wide live with lupus, nine-in-10 being female, and it mainly develops between 15-55 years.

Its exact cause is unknown, but triggers are thought to include stress, UV light exposure, and other environmental factors.

mrs Mein, 36, was diagnosed in January with Systemic Lupus Erythematosus (SLE).

some people suffer lupus that affects mainly the skin. But with SLE, joints, muscles and organs can be affected and the disease can kill in extreme cases.

“I’d been to my doctor with knee and elbow pains and developed a terrible rash where my skin was exposed to sunlight,” said mrs Mein, who lives with husband Robert and children Ashleigh, 15, Elliot, 13, and Erin, nine, in Laurel Road, Bassaleg.

“I had a back operation and the anaesthetist told me afterwards to get back to my GP about the rash, which got worse in hospital.

“I’ve had creams, steroids, antibiotics. Nothing worked, but a friend’s mum had lupus and said it sounded like that, so I asked to be tested.”

“I think I’ve had it about three years, but it can be very difficult to diagnose. I was very frightened because I know of someone who died of it at 26 years old.

“It was classed as a terminal illness until the 1970s, and a lot of the information about it is quite negative.”

mrs Mein is now on an anti-malaria drug to help suppress her symptoms, and also requires painkillers.

“There’s no cure, just minimising and managing it, but people with lupus suffer flare-ups. It’s a fickle disease, very unpredictable.”

THE fundraising and awareness evening will be held at Bassaleg and Rogerstone Social Club on Friday may 27, starting at 7.30pm, and includes a band, buffet, disco and raffle.

mrs Mein hopes to raise £1,000. “This is a debilitating and life threatening illness. I used to have an active social life, but now I’m in bed by 5pm or 6pm most nights, I have to cover up in the sun, and some days I can barely move for the pain,” she said.

“The whole fundraising thing is to do something positive, rather than sitting and worrying.”

To donate, visit justgiving.com/Lupusfundraisingawareness

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