Living life on her terms

editorial image

A Banchory artist who suffers from a rare disease has spoken to the Piper about how she continues to lead an active life despite the condition.

Beverley Black has suffered from scleroderma for the last 30 years. It is a rare auto-immune, connective tissue disease, that affects the internal organs, including the heart, lungs, kidneys and digestive system.

Beverley first experienced symptoms of Raynaud’s disease in 1979, which is a common condition, in which the blood supply is temporarily prevented from reaching the extremities on exposure to the cold or any slight change in temperature. It affects approximately one in five of the UK’s adult population and can also be an early symptom of scleroderma. A blood test can help to eliminate or confirm whether this or any other underlying condition is present.

Beverley said: “The Raynaud’s was triggered off when I was still a student. I was on a mountaineering expedition to Greenland with Durham University when a good friend died. The shock of the incident must have triggered it off.

“However it wasn’t until two or three years later when I found out the Raynaud’s I was getting was actually scleroderma - this bigger disease that was underlying.

“Initially, I felt the symptoms of white, numb hands, but I didn’t know what it was.

“It was by chance I found out about the scleroderma, because I was in hospital for something else when I got recommended to have my hands looked at.

“Although Raynaud’s is quite common, people often ignore it and don’t realise it could be a sign of something more serious.”

Scleroderma is much less common, as the disease only affects one per 10,000 of the UK population.

Anyone of any age can develop scleroderma. It is four times more common in females than males and during childbearing years, the percentage rises to 10 females to one male.

Scleroderma usually begins between the ages of 25 and 55 and is usually preceded by Raynaud’s.

Beverley continues to lead an active life and loves nothing more than hillwalking and skiing despite struggling with the cold, thanks to various gadgets and medication.

She explained: “I have lived with it for all this time and have always been very active. I’m still able to do this through using gadgets to keep me warm as well as medication, which keeps the other symptoms at bay.

“However, in the last few years, the condition has slowly caught up with me and my energy levels have declined and because all the vessels in the body have become rigid and stiff, they don’t function properly, so it leads to draining energy levels.”

Beverley works as a self-employed artist and regularly has an exhibition on show at the Milton Gallery at Crathes

She regularly draws on her experiences on the mountains and finishes her work at home, where she needs a high temperature to allow her fingers to function properly.

Beverley has urged people with similar conditions to stay positive.

She said: “I guess the message I want to get out there is that although you have these illnesses, it should not stop you getting out and living life on your own terms.”

Professor Chris Denton, of the Royal Free Hospital in London, said: “Awareness of scleroderma is essential if patients are to receive an early and accurate diagnosis. There is growing appreciation that the burden of scleroderma extends into many important and neglected areas which require further research.”

The Raynaud’s & Scleroderma Association (RSA) are highlighting scleroderma, which affects approximately 8,000 people in the UK. The main objective of the association is to raise awareness of rare diseases and the impact they have on patients’ lives, amongst the general public and decision-makers.

The RSA has launched the ‘Cool Million’ appeal, which aims to raise a million pounds by 2012, to fund research projects into Raynaud’s and scleroderma. There is no cure for either of these conditions and research is essential.

Professor Dame Carol Black, president of the RSA said: “The RSA has been crucial to the progress that has been made to date, but so much more remains to be done. “It is on the common problems in Raynaud’s and scleroderma, which so blight people’s everyday lives and cause distress and interference with normal activities, that research is particularly needed. This is a great campaign.”

A free information pack which includes details on Raynaud’s, scleroderma and handy hints on keeping warm is available by calling Freephone 0800 917 2494 or by visiting the RSA website