Scleroderma is a hard word to pronounce and an equally challenging condition to live with. So when Cushla heard her specialist tell her that’s what she had, she had no idea of how her life would change.
It is a rare chronic, often progressive, autoimmune disease in which the body’s immune system attacks its own tissues. It has no known cause and no cure and is one of the more than 140 different forms of arthritis.
“Sclero” means “hard” and “derma” means “skin”. But hardening skin is just one of many symptoms for people living with scleroderma. Stiff joints, digestive issues, lung scarring, kidney failure can result. And sometimes be fatal.
Arthritis New Zealand is using World Scleroderma Day on Monday 29 June to raise awareness of this condition.
“I was in my late 30’s when the diagnosis was made and for the first year I retreated into myself, said Cushla. Trying to deal with the fatigue, swollen feet, weight gain and the medication side affects are a constant challenge. My gums started swelling which resulted in a number of oral surgeries. I’ve also had to second guess normal life planning such as coping with holidays and travel. Late nights out, dancing, with friends are a thing of the past.
However, the support and understanding of my employers and work colleagues has been amazing and I couldn’t comprehend what life might have been like without that.”
“Scleroderma affects the connective tissues of the body (tissues that hold together muscles, joints, blood vessels and internal organs). The connective tissues of people with scleroderma have too much of a protein called collagen. Collagen is important to give connective tissue its strength, but excess collagen causes hardening and tightening of the affected area.”
