Jill Will, a 34-year-old health expert from Mintlaw, has my full attention as she describes the vascular disease she lives with — Raynaud’s.
She explains how the condition affects the extremities, can lead to secondary illnesses such as lupus (as it has in her case), and yet, despite impacting an estimated 10 million people in the UK — making it as common as hay fever — it remains relatively unknown.
Jill’s insight is fascinating. But that’s not the only reason I’m listening intently. As Jill talks, I realise I might be one of those 10 million.
“Most commonly, it affects people’s fingers and toes, but it can also impact the nose and even the eyes,” she says. I nod along, thinking of my own fingernails, which have always had a purplish hue.
“For some, the affected areas turn a waxy, white-yellow, showing a clear lack of blood supply.”
Okay, that doesn’t sound like me. But go on…
“Others may notice their skin taking on a dusty blue tone.”
Bingo. Dusty blue. That’s me.
Purple fingers and an aversion to cold — do I have Raynaud’s?
When I sat down with Jill to speak about Raynaud’s, I had an inkling the conversation might turn personal. I’ve never been diagnosed, but medical friends have remarked that my blue-tinged fingers — especially under my nails — suggest I might have it.
It’s never noticeably affected my life. I’ve always hated the cold, but I mostly chalked that up to a lack of moral fibre — much like my refusal to go anywhere near cold water swimming.
But it turns out Jill is on the hunt for people just like me.
A former NHS nurse and lecturer at RGU’s School of Health, Jill was recently appointed the north-east health specialist for Scleroderma & Raynaud’s UK (SRUK), a charity supporting people with those conditions.
Right now, the charity is urging the public to take part in the largest ‘citizen science’ study of its kind — a 60-second online test designed to help identify those who may have Raynaud’s.
The data gathered will be crucial in advancing research into Raynaud’s and related autoimmune conditions, including scleroderma — a life-limiting disease that can harden both the skin and internal organs.
Since the campaign launched in November, more than 31,000 people have participated, but more data is needed to strengthen the study’s findings.
This is where I come in. Jill says that if people displaying any Raynaud’s symptoms take the survey, it can help advance the charity’s mission.
“We still don’t know why so many people have it,” Jill says. “That’s something we really want to understand. By taking the test, people can be part of the answer.”
How Jill has battled Raynaud’s
I took the test, but this isn’t just a story about my slightly purple fingernails and aversion to all things Wim Hof, so I’ll leave the results till later.
It’s about Jill’s own battle with vascular conditions and how she still struggles with the consequences of Raynaud’s today.
To understand its impact, it helps to compare Jill’s experience with mine. Like me, she’s no fan of the cold.
She grew up on a farm in Buchan and vividly recalls the misery of collecting potatoes from the shed in deepest winter.
“I don’t remember a time when I haven’t had cold hands,” she says.
But where she differs from me — and from the majority of people with Raynaud’s — is that along with the coldness came excruciating pain bad enough to make her cry. The pain would continue as her hands warmed up.
In her teens, it got worse. At 25, she developed her first Raynaud’s ulcer—a painful sore on her toe caused by a seam on her tights rubbing against her numb skin. One of Raynaud’s key symptoms is restricted blood flow to the extremities.
“It was basically a skin breakdown because the circulation was really poor,” she explains. “It would take a long time to feel anything.”
She was given medication, but by 2020, her condition had progressed. She developed arthritis associated with Raynaud’s, and painful sores became more frequent. The skin on her fingers felt unnaturally tight.
Her Raynaud’s was developing into secondary Raynaud’s — a more severe form that can signal underlying autoimmune diseases. Not long after, she was diagnosed with lupus, a chronic condition that causes inflammation and tissue damage.
The treatments available for Raynaud’s
Jill is quick to point out that Raynaud’s itself doesn’t cause arthritis or lupus. But it can be an early warning sign of both, which is why the SRUK survey is so important.
“We know that around 300,000 people in the UK have secondary Raynaud’s, and catching some of those autoimmune conditions early on is really helpful for prognosis.”
As for treatment, medications are available — Jill has taken them since her teens. But lifestyle changes can also help, such as stopping smoking and making simple adjustments to stay warm.
“Some people are able to shake it off without having to make too many adjustments,” she says. “For others, it has a much bigger impact.”
Jill doesn’t let Raynaud’s hold her back
Jill, who lives with her husband Jim and labradoodle Jimmy, still struggles with her condition. When her lupus flares, it worsens her Raynaud’s symptoms, so she’s constantly on alert.
She still dislikes the cold, though these days it shows up in an aversion to the chilled aisle at the supermarket.
“I’m not going to hang about there longer than I need to,” she laughs.
But she isn’t letting it hold her back. This year, to raise money for SRUK, she’s signed up for the Aberdeen Kiltwalk, an 18-mile charity walk through the city. And she remains optimistic that ongoing research will lead to better treatments.
“None of us know what’s in store for us,” she says, “but I know there are options for me.”
The worrying conclusion to my Raynaud’s survey
As for me, I took the Raynaud’s survey. The short questionnaire asked the kind of questions I’ve often wondered about — do my fingers and toes change colour in the cold? Is it painful when they do?
The result, I’m afraid, was inconclusive. “You may have Raynaud’s,” the automated survey told me.
Which means I still don’t have a medical excuse to avoid jumping into icy lochs.
Perhaps I just lack moral fibre after all.
Click here to take the Raynaud’s survey from SRUK.
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