Caroline's Story

Caroline has been living with Raynaud’s since she was a child and finds it affects her daily. The condition affects the circulation in her hands and feet and can cause extreme pain. She is often unable to feel anything in her fingers and sometimes must ask for help at work because of the condition.

She explains:

“I get attacks randomly most days. It can be anything from half my finger turning white to all fingers and toes going completely white, no warning, and they can take up to an hour to come back. When I have a bad attack, I can’t feel anything, there was one instance where I cut my finger badly and didn’t feel a thing.

“I can’t tell when I will have an attack, but I do find that switching temperatures quickly can sometimes trigger it. There have been times at work where my fingers have been too numb to perform injections and I have to ask a veterinary nurse to do it for me.”

“I’m having a particularly bad winter with my Raynaud’s this year, especially with chilblains, which have cracked and make working as a surgeon very painful on a day-to-day basis.”

The importance of affordable heating

Caroline is not alone in struggling with Raynaud’s this winter. Our energy survey towards the end of last year found that the high cost of energy is stopping many from heating their homes properly, which risks leaving them in agony.

And more than three in four people with Raynaud’s (77%) has experienced an increase in attacks, which they blame on stress caused by the cost-of-living crisis.

This is why, this Raynaud’s Awareness Month, we are asking people affected by the condition to write to their MP and call on them to put pressure on the Prime Minister and Chancellor of the Exchequer to keep heating affordable for people with the condition, whose health depends on it.

Caroline says she has been actively trying to use less energy due to the cost, which has meant finding other ways to stay warm: “I am often wearing more layers at home including a woolly hat on the really cold days. Luckily, we have a wood burner so we have this on the cold evenings and I can snuggle up under a thick rug too.”

Write to your MP to demand action

As the only charity in the UK dedicated to supporting people with Raynaud’s, we have been hearing how some of our supporters are ‘terrified’ to use their heating due to rising costs.

With the Energy Price Guarantee set to increase in April, we fear this situation will only get worse, particularly if we experience another harsh winter.

Help us fight for more help with heating costs!

We need as many MPs as possible to understand what Raynaud’s is and the challenges that people have faced this winter. Together, we can put pressure on the government to act.

We have put together some advice on how to write to your MP, including a letter template that you can use.

Ahead of the Budget announcement next month, we are calling for the government to consider

• extending the Energy Price Guarantee for vulnerable groups, to include people with Raynaud’s
• committing a portion of the money raised from the Energy Profits Levy to provide financial assistance to those with conditions like Raynaud’s whose health depends on affordable heating
• including Raynaud’s as a criterion for the annual Warm Homes Discount.