Irish coverage for World Scleroderma Day

Two of my articles recently appeared in the Irish press to coincide with World Scleroderma Day on June 29th  in a bid to highlight this terrible disease.

I wrote both these articles based on my 8-month masters thesis project, which saw me produce and narrate a 45 minute radio documentary examining the life of sufferers of scleroderma in Ireland and the progress that has been made in understanding and treating the symptoms of this incurable auto-immune disease.

Woman’s Way magazine:

This article appeared in Woman’s Way magazine, dated June 24:

Womans Way June 24 Monica Heck scleroderma

TheJournal.ie:

This article ran on TheJournal.ie, dated June 29th and got nearly 20,000 views.

 

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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. Read more of this post

The Marble Lady – the story of scleroderma in Ireland

Radio documentary about scleroderma

Radio documentary about scleroderma

This is a radio documentary on the topic of scleroderma (systemic sclerosis). It tells the story of patients in Ireland who suffer from this rare, debilitating and sometimes life-threatening auto-immune connective tissue disease.

The programme will allow the listener to look behind the word “scleroderma” – from the Greek words “skleros” meaning “hard” and “derma” meaning “skin” – 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 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.

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.

The project is my journalism masters thesis and awaits reviewing but will be released in September – watch this space!