'I am Number 17' rare disease campaign launched in Ireland

February 9 2024, 09:29am

I am number 17

A new rare disease awareness campaign, I am Number 17, was launched in Ireland on 7 February. It includes the unveiling of an exhibition of photography by Julien Behal of the 17 “changemakers” who have chosen to share their lived experience of rare disease.

Approximately 300,000 (one in 17) people in Ireland live with a rare disease. Rare disease is defined as a disease that affects less than one in 2,000 people (in some cases, it’s as few as one in 100,000).

There are more than 6,000 different rare diseases in Europe, 80 per cent of which have a genetic origin, either from an inherited gene or a de novo (new) gene mutation. Other rare diseases arise from infections, allergies or teratogenic (chemicals, radiation, etc) causes. The European Organisation for Rare Diseases states that the paradox of rarity is that even though “diseases are rare, rare disease patients are many”.

One of those who features in the campaign is Ian Deegan, a tech worker and father of 12-year-old twins, who is living with X-linked agammaglobulinemia (XLA), a rare type of primary immunodeficiency disorder that prevents him from making antibodies. Ian Deegan got involved with the I am Number 17 campaign to increase awareness of rare diseases. He said, “There are people like me who don’t show any outward signs of a problem, but they do have a rare disease,” says Deegan who takes maintenance antibiotics and injects himself at home with a subcutaneous infusion every three weeks to help him fight off infections. “I can’t fight infections because I don’t produce enough immunoglobulins so the treatment tops up these antibodies in my blood.”

Ian says that he “lived” in Temple Street hospital [now CHI at Temple Street] as a child because he had so many infections. His younger brother, Jimmy also had XLA and he died from pneumonia when he was 20. Over the years, he has developed bronchiectasis, a form of COPD [chronic obstructive pulmonary disease] which leaves him with a wheeze and cough most of the time. Ian says, “If there was one thing I could get rid of, it would be this.”

You an find out more about the campaign and read all of the 'I am Number 17' stories on their website Home page | I Am Number 17