TV presenter Jenni Falconer, who also has the condition which affects blood circulation, shocked fans when she posted pictures of her blood-deprived finger. Bangor schoolteacher Sharon McBride tells Una Brankin how she copes with it.
At 42, Sharon McBride owes her fresh complexion to keeping out of the sun and her factor 50 SPF creams.
Hot sunshine brings the Bangor Academy teacher out in a rash, but cool air — even a mere few degrees below room temperature — brings on a far more visible and disabling effect.
Sharon suffers from scleroderma and Raynaud’s, incurable autoimmune conditions which many people only became aware of recently when Scottish TV and radio presenter Jenni Falconer posted alarming pictures on Instagram of her bloodless index finger.
Jenni, who is also 42, was 17 when she contracted Raynaud’s, an often painful and numbing affliction which affects blood circulation in the cold or at times of anxiety and stress, resulting in the fingers, toes and even the tip of the nose turning white or blue. Jenni, who had previously admitted that a Raymaud’s attack “brings tears to my eyes”, told fans that the cold weather had worsened the effects of the condition.
Raynaud’s affects up to 10 million people in the UK. Sharon, who lives with her parents in Bangor, often experiences her whole hands blanching, right up to her wrists. She was in her early 30s when her symptoms first emerged.
“When I was out in the cold, the tips of my fingers would go white — they’d be numb but still usable,” she recalls. “It happened mainly in the winter but also in colder parts of the school, or when I lifted a bottle of milk out of the fridge.
“A friend of mine recognised the symptoms and I went to the doctor. He prescribed some medication to help the blood vessels relax, but I didn’t notice a huge difference. I had to give up running, which I loved. You’ll never find me on a ski slope or playing hockey or tennis, either. I try to use the gym instead: I need to lose weight, but it’s hard to leave the house when it’s cold.”
Sharon ran her last half marathon race a week before she was diagnosed with Raynaud’s, named after French physician Maurice Raynaud, who first defined the condition, in 1862, as a spasm of the arteries, causing reduced blood flow.
As blood flow returns, the affected areas turn red and tingle or burn. Episodes typically last minutes, but can continue for up to several hours.
Sharon’s condition worsened four years ago, when she began to experience migraines, acid reflux and fatigue. Further blood tests led to a diagnosis of underlying scleroderma, an autoimmune, rheumatic and chronic disease which hardens the connective tissue between the organs, damaging the walls of the smaller arteries, such as those in the fingers and toes.
“Lupus was mentioned at one stage, which was very scary, so of course I went on to Google and got completely terrified,” Sharon admits. “I was scared to death. Scleroderma can be very serious — it can affect the lungs and the heart.
“I get a lot of reflux, which can lead to Bart’s disease (a lethal disorder of the red blood cells). I’m on medication to stop that now. It does affect my digestion — I was bent over in pain the last time I had spicy food, and bread can stick in the oesophagus. And I like my grub!
“But I’m at the mild end of the scale. I’m very grateful for that.”
Meanwhile, the Raynaud’s symptoms persist. To drive, a heated steering wheel is essential for Sharon, and she occasionally must ask a supermarket cashier to take her purse out of her handbag when her hands are numb.
During a recent fire drill at Bangor Academy — where she teaches French, Religious Education and life skills — her hands were affected so severely that she could only move her thumbs. Also, the fatigue brought on by the condition has meant spells away from work.
As she says: “I’ll have a few good days then I’ll just crash, and I’ll be shattered. I’ll have a good sleep but wake up tired. There’s no medication for that. I just have to get plenty of rest — and stop partying.
“I got a very bad flu this winter over two months — the virus over-stimulates my immune system and makes the joint pain a lot worse. It was miserable. I’d have a shower and try to do some vacuuming, then fall on the settee, exhausted. I don’t like taking time off work. I love teaching; I’ll come in when I’m feeling rough and just get on with it.
“The kids were pleased to see me when I came back after the flu. They’ll see my hands going white sometimes and they’ll be curious and ask about it, but in general, people don’t comment.
“If I’m out in a bar and my friends notice my hands changing colour, they’ll go and get me a glass of hot water to hold. I can’t really bring a hot water bottle in with me.”
Sharon’s parents, John and Alberta, both retired, have also been a constant source of support, driving her to A&E and other departments at the Royal Victoria Hospital at Christmas, when she developed an eye infection.
Scleroderma and Raynaud’s are not thought to be hereditary, although Sharon feels that there may be a connection to her great aunt’s severe rheumatic pain, and an uncle’s Graves’ disease, an autoimmune disorder of the thyroid.
Her younger brother, John, a London-based electrical engineering consultant, has had no such health problems.
Their father once suffered a stroke, but made a full recovery and is an active member of his local OAP club.
Like both her parents, Sharon is a person of faith and a member of the congregation of St Andrew’s Presbyterian Church in Clandeboye.
When it comes to her illnesses, she admits she has asked God: why me? But she reasons that He and the physical realm are separate.
“It’s not helpful to think, why was I ‘chosen’ to go through this. Why not me? You can’t be spared from everything you go through, but I can pray; I have my Bible. The church have been very supportive. They pray for me and give me lifts to appointments.
“People do question why God, if He is all powerful, allows suffering. I know it’s very hard to understand, but I have my faith. I’ve had a big change in perspective since I was diagnosed; I see life as finite and I never take things for granted.
“There is no cure for what I have, but the treatments are improving. You won’t find me on a skating rink, but I’m going to the Canary Islands this year to sit in the shade with my big sun hat and long sleeves.
“I think I’ll live well with my conditions. I’ll just make the most of my time in the now.”
The scleroderma and Raynaud’s UK charity encourages anyone who is concerned they may have Raynaud’s to take its online test — available on the SRUK website: www.sruk.co.uk
The five key signs of Raynaud’s
1. Cold fingers and toes
2 Colour changes in the skin in response to cold or stress
3 Colour changes in the affected area to white, then blue and then red
4 Numbness, tingling or pain in the fingers and toes
5 Stinging or throbbing pain upon warming or stress relief
And what you need to know about the condition
Up to 10 million people are affected by this condition in the UK
SRUK’s research reveals that only 4% are able to identify the symptoms of Raynaud’s
Worryingly, only 10% of people on average who had Raynaud’s symptoms would visit a GP
Raynaud’s is a condition that affects the blood supply in the body’s extremities — usually the fingers and toes — many people with the condition regularly suffer pain and discomfort during a Raynaud’s attack, making some every day activities almost impossible
Scleroderma and Raynaud’s UK has launched an online test to help identify in under a minute whether you have Raynaud’s, as part of its #KnowRaynaud’s awareness campaign
It is important to get a diagnosis if you have Raynaud’s, as for one in 100 people it can be a sign of an underlying rare condition, such as scleroderma
Scleroderma is an autoimmune condition where the body starts to attack healthy tissues, causing hardening and scarring. The condition can affect the skin, underlying tissues and internal organs. Certain types of the condition are life limiting and, in some cases, can be life threatening.
Scleroderma affects approx. 12,000 people in the UK.
Scleroderma and Raynaud’s UK is the only charity dedicated to improving the lives of people affected by scleroderma and Raynaud’s.
For further information tel: 020 3893 5991 or go to www.sruk.co.uk