One of our resident columnists, Nicola Whitehill, took the opportunity during Scleroderma Awareness Month to profile some of the people who live with the disease from around the world.
Writing on her own personal blog Raynauds Scleroderma Awareness, Nicola shares a rare view into the lives of those living with scleroderma. Nicola was diagnosed with scleroderma in 1997 at the age of 24 and was given just 15 months to live. Two decades later, she’s a proud advocate and activist for the disease.
Her patient profiles feature 30 different people from all corners of the globe, including Margie Kugler from Perth, Australia, who was diagnosed with CREST syndrome in 2001 at the age of 39. When it comes to living with the disease, Kugler explains that her biggest challenges are depression and anxiety, gastroparesis and fatigue.
Haslina Wannor from Singapore has systemic sclerosis with interstitial lung disease. She was diagnosed at the age of 29 in 2009. Wannor shares that her biggest wishes for the future are to see her daughter get married, for more awareness and emotional support to be available to those suffering from scleroderma, and for a cure to be found.
Alice Martins Correia from Switzerland was diagnosed with diffuse systemic sclerosis and Raynaud’s in 2002 at the age of 40. Living with the disease is far from easy, and her biggest challenges are keeping her new lungs in good health, dealing with digital ulcers, and breathing and walking normally.
To find out more about these ladies and others living with the disease, visit Nicola’s blog.
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