Claire’s scleroderma has become progressively worse since her diagnosis and has meant she cannot work or do simple things like she used to, as she has lost mobility in her hands, fingers and lips.
As a music teacher, I’ve had to adapt my working style because my skin is like an old elastic band now. My fingers are curled so playing the piano is difficult, whilst my mouth has tightened so the flute is also a challenge.
Claire first noticed the symptoms of Raynaud’s in 2018 at the age of 38. She says, “My Raynaud’s was affecting my life for a while before I was diagnosed. During the winter of 2019, I remember I was getting the train into work one day each week. My feet would be like ice blocks with the cold, and then I would lose feeling. My hands would turn blue, and I could not use them. I was taking medication at the time, so I assumed this was just a side-effect.”
But during the spring and summer of 2020 she was still getting symptoms, even though the weather was so warm. Claire also started to notice some other symptoms, including a strange sensation in her face, so she went to the GP, who referred her to a rheumatologist. She was eventually diagnosed with diffuse scleroderma in December that same year.
The condition doesn’t only affect her work but her home life too.
At home, I cannot do normal household chores in the same way as before. I use the dishwasher much more, and my husband will often do the dishes now. I am also not able to cook as much as before. Sometimes, if I come in from the cold, I can’t make dinner because I just can’t take off my gloves to use my hands to cook.