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Friday, February 20, 2009

Cold snap means misery for Raynaud's Syndrome sufferers


By Laura Coventry

As we struggle to cope with the UK's coldest winter in 13 years, spare a thought for the 800,000 Raynaud's sufferers in Scotland who experience crippling pain in their hands and feet in chilly weather. Most youngsters cannot wait to play outside after a snowfall, but Glasgow mum Mehrin Arshed is unable to venture out with her 13- month-old daughter Khadijah. That's because 29-year-old Mehrin suffers from Raynaud's, the debilitating condition which causes her hands and feet to go blue and brings constant pain and discomfort.

This suffering intensifies during a cold snap.

Fortunately, Mehrin comes from a large family (she is the second oldest of seven siblings), so little Khadijah does not miss out on enjoying the snow. The full-time mum, who is originally from Dumbarton, said: "I want her to have as normal a life as possible. All my sisters are very helpful and if I can't go out, they take Khadijah out in the snow. She doesn't miss out, but I do.

"It's horrific, the pain in my hands and feet and joints is absolutely unbearable.

"If I go outside, I am confined to my bed for the next two days. No matter how well you try to wrap up, it doesn't help.

"I try to lead as normal a life as possible and not to let Raynaud's restrict my life, but if I do certain things there's always consequences afterwards. My joints will flare up and I will have sore hands and feet."

Mehrin, who is married to Muqtadar Siraj, 29, believes she has been experiencing symptoms of Raynaud's - an incurable condition where blood is prevented from reaching the extremities of the body - for many years before diagnosis. But getting medics to take her illness seriously proved a tough challenge for the young mum.

She said: "I always had cold hands and cold feet, but my hands used to swell up and go blue a lot. I didn't know why.

"Doctors did not know what was wrong with me.

"I used to Google my symptoms on the internet then go to my doctor and say 'maybe I have got this'. I was called a hypochondriac, another doctor thought I was an attention-seeker. It was frustrating.

"I thought 'I am in too much pain for this to be in my head'.

"I knew something was wrong and I always kept trying to find out what it was. I would advise others to keep on at their doctor."

But it all came to a head in 2005 when Mehrin was hospitalised for seven days and was bed-ridden for a month. During that time she lost her appetite and her weight plummeted to five stone. This was related to an underlying condition, of which her cold hands/cold feet condition, Raynaud's, is a symptom. However, doctors still did not know what was exactly wrong with her. Finally she was diagnosed with lupus, a condition that is often difficult to detect. Lupus, which affects Mehrin's joints, is an autoimmune disease that causes antibodies to attack the sufferer's own body tissues instead of protecting them.

It was first suspected by Mehrin's beauty therapist, who discovered a rash on her face. She remembered, from a course she had studied, that this could be a symptom of lupus - and she was right. But just a few months later, Mehrin was back at the doctors insisting there was more to her cold hands and feet. That's when Raynaud's was also diagnosed.

Often Raynaud's is the first symptom of other underlying conditions such as scleroderma or lupus. Coincidentally, younger sister Shanaz, 22, is also a sufferer. Now Mehrin always wears thermal gloves - outdoors and indoors - and never leaves the house without her hot water bottle. Although her conditions are managed with a cocktail of steroids, painkillers and other drugs, and regularly swimming which helps soothe her pain, Mehrin is still in constant discomfort.

She added: "I suffer a crippling pain when I touch anything.

"Carrying heavy shopping bags can trigger a flare up in my hands.

Even turning on a tap, washing my face or clenching a fist is so painful.

"Nobody really understands the pain unless they go through it.

"During the winter months it's worse, all my joints are affected. I love hot weather. I was in Italy last year and it was amazing. I felt so normal for the week I was there.

"The only thing keeping me in Scotland is my family."

Battling lupus, Raynaud's and arthritis are not the only illnesses the mum-of-one has to contend with. She also suffers from the blood-clotting condition Hughes Syndrome, which was diagnosed after she sustained a blood clot in her left lung while pregnant with Khadijah in 2007. Because of the potentially-fatal threat to mother and baby, Khadijah was delivered four weeks early, weighing 5lb 7oz. Despite living with her health conditions, Mehrin remains upbeat and said: "The best advice I could give anyone is try to lead as normal a life as possible and don't let it get you down.

"I used to stay in my bed for days when my joints were too sore.

"It is difficult but the more you try not to let this health condition take over your life, the happier you will be."

Fiona Trotter, spokeswoman for Raynaud's & Scleroderma Association, said: "At this time of year, with freezing temperatures and snow on the ground, Raynaud's can be quite distressing for sufferers and should be taken very seriously.

"If you can imagine the pain when your fingers are trapped in acar door - this is the type of excruciating pain experienced on a day-to-day basis by people with Raynaud's."

Mehrin is speaking out about her experience with Raynaud's to mark Raynaud's Awareness Month (February 1-28). For a free information pack about Raynaud's and handy hints on keeping warm, call 0800 917 2494 or visit the website www.raynauds.org.uk For more details about lupus see www.uklupus.co.uk

'The pain is unbearable. If I go outside, I am confined to my bed for days'

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