Claire first noticed a problem when she went to the jewellers
A woman has revealed she can’t clap her hands, press button s or even do the dishes because of a rare condition. C laire Leathem noticed her hands were getting more and more numb until one day, she found she couldn’t even press buzzers on school intercom systems.
But it wasn’t until the mum-of-two went to the jewellers to get her rings resized that she realised something was seriously wrong. “My body was heavy and sore, and my hands and feet were always freezing cold,” said the music teacher from Northern Ireland.
“My hands were swollen all the time, but I was putting it down to Raynaud’s, which my mother has. It’s a condition that causes the small blood vessels in a person’s hands and feet to suffer an extreme reaction to the cold.
“But it turns out that I had developed a second autoimmune disease, scleroderma, which can co-occur with Raynaud’s. I couldn’t flatten my palms to each other.”
Scleroderma, also known as diffuse systemic sclerosis, which Claire had never even heard of, is caused by excessive collagen production and is characterised by hardened, thick skin.
Claire, who is now raising awareness of the conditions through Scleroderma & Raynaud’s UK, said: “I was diagnosed with scleroderma because of the tightening of my skin, which had started on my face and my hands. It then spread to my chest area and various parts of my body, including my abdomen and the back of my legs.
“I’ve now been referred to physiotherapy and other services to try and help keep my skin loose and slow down the process.”
Claire explained that while scleroderma is progressive, she is “generally stable” after finding a treatment plan that works for her. She takes 96 pills a week, equating to 14 a day, including viagra, which works to improve circulation in her body.
Claire has also had a stem cell procedure, which saw fat from her stomach injected into her face – something that has helped restore movement to her mouth. And she has altered her diet too – avoiding sugar and dairy products in a bid to keep the inflammation in her body to a minimum.
Claire says the condition has had a huge impact on her life, even though her husband Stuart is always happy to do the dishes. Claire said: “My fingers are curled – so it’s the after effects of doing the dishes that makes it so hard with the different temperatures of the water.
“I throw everything in the dishwasher rather than into the sink. I paraffin wax my hands to stop them from aching as they are so sensitive – they are incredibly painful if they take the slightest knock.”
Claire said sometimes she barely recognises herself in the mirror because of her thickened skin, which feels like “an old, worn-out elastic band”. The condition has caused her mouth and nose to become smaller while her cheeks have grown larger.
Claire has also had to stop teaching more advanced flute lessons, despite it being her main instrument, because of her illness. She said: “I’m really struggling with day-to-day discipline of having to really watch what I eat because my throat is affected by scleroderma.
“My gastrointestinal tract overreacts to many foods and drinks, and that’s very, very hard to control. Raynaud’s in the winter is also very, very hard to control with the cold – the fatigue is horrendous.
“That’s why I’m freelance. I can get more work done in the sunshine and slow down in the winter when I basically hibernate.”