The Marble Lady: the face of scleroderma in Ireland

“If…cancer, my particular cancer was put in front of me and scleroderma was put in front of me I’d pick cancer. Strangely. I’m better from cancer, I’m not going to get better from scleroderma.”

Unpredictable, irreversible, progressive and as yet, incurable , scleroderma is considered the deadliest of all connective tissue diseases. It’s estimated that 1 in 10,000 people will develop it.

From the Greek words “Skleros”, meaning hard, and “Derma”, meaning skin. It develops when the body produces too much collagen and hardens. Few people know about it yet in most cases it’s a life-changer and in some cases, it can kill.

Last year, I produced a radio documentary about this little known auto-immune condition, telling the story of patients in Ireland, mainly women and a handful of men, who suffer from this rare, debilitating and life-threatening auto-immune connective tissue disease.

The programme allows the listener to look behind the word “scleroderma” and discover a world where the body suddenly hardens, producing an excess of collagen which damages the skin, vascular system and internal organs.

Told by the patients themselves, the story of scleroderma is punctuated with up to the minute medical explanations and contextual information to ground the documentary in Ireland.

The project, which was completed over 5 months, involved the collection of over 9 hours of audio recording during interviews with 20 people across Ireland. Its objective is to inform and educate the wider public in Ireland about this condition and the challenges faced by those living with it every day.

I’m currently trying to find a home for the documentary! I’d like to get it aired on local and national radio stations across Ireland and abroad. If you know anyone (editors/program makers) who would like to include part or the entirety of my research into their programming, if you’d like me to contribute a an article about some aspect of my research, please contact me!


About monicaheck
Monica Heck is a bilingual freelance writer and journalist based in Dublin, Ireland.

One Response to The Marble Lady: the face of scleroderma in Ireland

  1. Pingback: Irish coverage for World Scleroderma Day | Monica Heck

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