'My fingers suddenly turned white and went totally numb'
Raynaud's disease is a rare circulation disorder yet more people have it than MS, writes Edel Coffey
COMPLAINING about the Irish weather is a national pastime. But for some, the cold Irish weather can play havoc with even the simplest aspects of their lives. For them, the slightest drop in temperature can have a catastrophic impact on their health.
In 2010, Sarah Lynch was working on her computer when one of her hands went completely white and numb. "I didn't know what was going on," says the 30-year-old from Ratoath, Co Meath.
"My mam is a nurse so I ran to her and she tried to rub my fingers to get the colour back into my hand. It felt numb but with pins and needles at the same time."
Sarah had been in a car crash a few years beforehand so doctors initially assumed it was connected to a related back injury and she was sent for an MRI, which came back clear.
In 2010, the snow came and Ireland experienced one of the worst winters on record. "I was out walking my dogs and I had ski gloves on but I noticed that my middle finger on my left hand was really cold and it hurt. I took off my glove and my finger was white and sore."
These incidences continued and intensified over the next year and in 2011, when another winter brought more snow, Sarah's condition had worsened.
"It was moving into more fingers and they would go white, and then blue, and then red and the red was the hardest. It was like a flush of blood to the fingers, like when you squeeze your fingers really tight."
Sarah's mother suspected it was Raynaud's disease, a rare disorder where the blood supply to the fingers and toes is constricted in response to cold or stress. Over time, it can cause ulcers of the skin.
In March 2012, Sarah was diagnosed with Secondary Raynaud's, a symptom of Scleroderma, which is a hardening of the skin caused by excess collagen.
"The skin hardens and splits, which can cause ulcers and then it gets infected because there's no oxygen going to the finger and it tightens and the skin pulls it back from the nail."
When she was in the hospital, getting treatment for an ulcer on her finger, Sarah saw a sign for the Irish Raynaud's society, Raynaud's and Scleroderma Ireland, which offers support for people suffering from these rare illnesses.
"My finger was wrapped up and I looked like ET. I phoned them on the spot.
"I was so distressed because nobody knew what was going on and nobody could give me any help.
"They were the first people where I heard someone identifying with what I was going through. They helped me in ways I'll never be able to describe. It feels amazing that there is someone out there that really understands and has access to help. It was such a relief."
The problem with rare diseases is that, by their very nature, they are not regularly encountered by GPs and emergency workers.
"You do start to think, 'Am I just making this up? Is it all in my head?'
"It's very distressing because you're being sent away with no explanation or without knowing that the doctors understand what you're saying.
"GPs don't know anything about Scleroderma and A&E didn't know about it either. My ulcer looked like a little cut but it was causing me more pain I had ever felt. It sounds dramatic but it was a distressing time."
While Raynaud's is considered a rare illness, it is more common than MS. "Everyone knows what MS is, and yet Raynaud's is not as rare as that. I think a lot of people suffer from Raynaud's and don't even know it."
Sarah's diagnosis has changed her life but she is adapting.
"You have to be careful because you can't feel how hot things are, like hot water and radiators.
"I always have extra tights in my work drawer. I try to have a long-sleeved top and I have really good quality sports thermals that I get from Lidl. I have to make sure I always have two pairs of gloves on."
Sarah works in events so if she has a job outside, she wears Ugg boots and her warmest coat. "You feel a bit embarrassed wearing a big coat but you just get used to
Are there times when it upsets her? "Sometimes, at weddings or events where girls typically wear a dress. When you've got Raynaud's, you think, 'Holy Moly, what am I going to wear?'
"You end up choosing your outfits based on what is warmest and what you can wear a tight-fitting slip and tights under. And we all know what Irish summer is like.
"I have an extra scarf or a cardigan wherever I go. I feel like a little old lady but I'm lucky that my friends and boyfriend are really great."
As an athletic person who swims, runs and plays tennis regularly, Sarah has had to adjust how she approaches sports too.
"You can't put your life on hold for anything unless it's going to be detrimental to your health.
"I'm learning ways of coping. Tennis is annoying because if you wear two pairs of gloves the racquet slips everywhere. When I'm running I have to wear two pairs of woolly Thinsulate gloves, even when it's not really cold. Even on hot days I have to wear one pair of woolly gloves. When swimming, I'm like a thermometer personified. As soon as I jump into the pool, even if the temperature is down by one degree I can feel it."
Has her diagnosis changed her attitude to life? "It's got to a point now where I fear the cold. I got to a point recently where I was starting to get distressed about it and with the ulcer I started to think is this going to happen to all of my fingers? I try not to think of that and just deal with it now and just keep going."
The advice of the Raynaud's society helped calm her fears. "What I'd love is if GPs were more aware of these rare conditions and if they could understand how distressing it is if the GP or A&E don't know about it. It would be great for those people to be more aware.
"Everyone should be aware that cold hands going white, blue and red should be checked out. It could just be primary Raynaud's, you might just have to live with it forever. It's manageable but there's a lot worse you could be putting up with so you just have to get on with it."
She pauses a moment before adding, "And if someone could organise better weather for this country, that would be great."
The Raynaud's Wall2Wall Christmas Charity Lunch takes place on November 29. Tickets are €80 and include a three-course meal at Marco Pierre White's Courtyard Bar & Grill.
For more information see www.irishraynauds.com or call 0818 363 999.