‘I often wear gloves and socks in bed due to Raynaud’s’

Claire Leathem, a freelance music teacher who lives in Bangor, Co Down, knows only too well how painful the condition, that temporarily constricts the blood vessels and affects circulation, can be.

Claire, 42, first began to experience the signs of Raynaud’s during 2018, when her hands and feet would become numb and change colour in the cold weather. She was eventually diagnosed when she visited her GP two years later.

Today, Claire experiences frequent, painful and sometimes debilitating Raynaud’s attacks that are usually triggered by the cold and emotional stress. Her condition has become progressively worse since her diagnosis and has also brought some additional challenges, because for Claire, her Raynaud’s is linked to scleroderma, a rare and often complex autoimmune condition.

Raynaud’s impacts upon Claire’s life in many ways, affecting what she is able to do and even what she can wear. More recently, the condition has also affected her career as a music teacher, by limiting her ability to play instruments and perform demonstrations in class.

“Living with Raynaud’s means that I need to work hard at trying to keep my hands and feet warm, so my routine is very different now.

“I now wear gloves of some sort all the time. Even when I am home, it’s not unusual for me to wear two pairs of gloves. In the winter months it’s common to trigger a Raynaud’s attack if I leave them off for too long. I just have to layer up and I now wear gloves and socks most of the time, even to bed overnight."

Claire said the recent cold snap has definitely made things much more difficult on a day-to-day basis.

“I am reluctant to take my gloves off now, just to do simple chores around the house, like making the kids’ lunches, wiping down the surfaces and doing dishes. The other day I couldn’t plait my daughter’s hair before school because I had already put all my gloves on, and I didn’t want to take them off because of the chill that morning.

“My condition has affected me in my job as a music teacher, as it has limited how much I am able to do. My fingertips get sore when I am typing or using a keyboard, and the Raynaud’s affects me in playing the piano and other musical instruments as well, which has definitely had an impact on my work as a music teacher.”

She added: The impact Raynaud’s has had on my work and home life has inevitably taken a mental and emotional toll, particularly on the days when the Raynaud’s properly takes hold and I find it saps my energy; but being prepared for attacks and trying to prevent them and also accepting the need to make adaptations is key.”

Although often triggered by cold weather, Raynaud’s painful symptoms can also be brought on in the summer months by holding cold items - such as a chilled drink or an ice cream.One of the most telling signs of Raynaud’s is discoloration to the skin. As well as the hands, it can also affect the feet, nose, ears or nipples.

Look out for the affected body part turning blue or white due to restricted blood supply, before turning bright red when you return to a warm environment, or de-stress.

“My Raynaud’s was impacting my life for a while before I was diagnosed.” Claire said.

"During the winter of 2019, when I was getting the train into work one day a week, my feet would be like ice blocks with the cold, and then I would lose feeling. My hands would turn blue, and I could not use them. I began wearing extra layers of socks, gloves and even two coats on the colder days!”

According to the charity, Scleroderma and Raynaud’s UK (SRUK), high energy prices and the cost-of-living crisis are putting the health of people with Raynaud’s at risk,

Ahead of the autumn budget statement, the charity wrote an open letter to the Chancellor of the Exchequer, Jeremy Hunt, urging him to provide some longer-term financial support for those living with Raynaud’s.

More than four in five people with the condition (83 per cent) rely on their heating to prevent painful Raynaud’s attacks. Despite this, more than three in four (76 per cent) say they have had a Raynaud’s attack because they were too worried about the cost of their energy bills to turn their heating on.

Sue Farrington, chief executive of SRUK, said: “The ability to keep your home at a warm, consistent temperature is crucial for people living with Raynaud’s. Keeping your core warm is one of the best ways to manage the condition and prevent painful attacks. Unfortunately, energy prices are making this virtually impossible for many, despite the government’s current package of support.

“We are consistently hearing from people how worried they are about turning on their heating and many are putting their health at risk by not doing so. The stress of the whole cost-of-living crisis is also making their condition worse.

“Affordable heating is vital for people living with Raynaud’s. As the government develops its long-term tax and spending plans, we urge the Chancellor and Prime Minister not to forget about the often-ignored needs of people with Raynaud’s so that they do not continue to suffer in silence.”

Visit sruk.co.uk for more information