Hannah rises to the challenge

Hannah Gray, 20, suffers from scleroderma, which affects the immune system, blood vessels and connective tissues.

As a child, her fingers turned blue and white when cold, and she experienced extreme pain as they warmed up again.

Her GPs were left baffled, as scleroderma is hardly ever seen in children, but Ms Gray was diagnosed at the age of eight by a doctor at the Sick Kids, who had seen just one other child with the condition in his career.

The student from East Linton, East Lothian, said: “They always said I’d grow out of it – but it got worse. When I used to play the violin, my violin teacher used to tell me to wash my hands, because she thought I’d got ink on my hands.”

The condition grew worse in her teens, she said: “I was getting cold for long periods of time. I was in hysterics with the tingling pain when my hands were trying to warm up again.

“When I was about 12 or 13 I started to get ulcers, like wounds that appear on your hands and feet, and then because with scleroderma you tend to get very bad circulation problems, all these wounds tended to get infected.”

Around one week in every six, she would be admitted to the Sick Kids for intravenous drugs to help clear up the wounds, but even when she was out of hospital, anything which involved using her hands, such as writing or carrying bags, could be painful.

Fortunately, she was recently prescribed a new trial drug, Bosentan, with special approval, as it’s rarely used on such young patients.

The new regime means she is now down to just three weeks of hospital treatment a year and is enjoying life as a student of English and Anthropology at Aberdeen University. But she will always have to battle the symptoms of the condition.

Despite the challenges she faces, Ms Gray has completed a month-long trip to teach at a peace school in Sri Lanka, which brings together Tamil and Sinhalese children.

She still had to ensure she had a full set of blood tests before and after the trip, and take care to avoid picking up infections due to the lowered immunity caused by scleroderma.

But she said: “It was amazing, I was pretty well because it was so warm. I found it quite tiring, but it was a great experience.” The Raynauds & Scleroderma Association has this week been marking Scleroderma Awareness Week.

Its founder, Anne Mawdsley, paid tribute to Hannah, who she said “has always put on a brave face and has the determination to live her life.”