What It Means To Live With A R...

The Last Word With Matt Cooper

What It Means To Live With A Rare Disease

Sarah Stacey
Sarah Stacey

5:27 PM - 28 Feb 2019

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Today marks World Rare Disease Day, which aims to raise awareness of rare diseases and their impact on the lives of patients.

Approximately 30 million people in Europe are affected by a rare disease, and 300,000 in Ireland will be impacted at some stage in their lives.

Diseases are classified as rare if they affect one in 2,000, or two in 10,000 people.

Alan Finglas, whose six-year-old son Dylan was diagnosed with Multiple Sulfatase Deficiency (MSD) at the age of two, joined us on the programme to discuss his own experience.

Dylan is the only child in Ireland with the condition, which affects 70 known patients worldwide.

It is characterised by developmental delays and begins with an enzyme deficiency, which causes toxins to build up in the body and slowly destroys the central nervous system.

Life expectancy is usually less than ten years of age, and there is currently no treatment.

We were also joined by Avril Daly, chair of Rare Diseases Ireland and Vice-President of EURORDIS - Rare Diseases Europe.

What It Means To Live With A Rare Disease

00:00:00 / 00:00:00


Read more about

Disorders Health Rare Disease World Rare Disease Day

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