International 22q11 Awareness Day 2020
A RED SPOTLIGHT ON THE LEAST-KNOWN MOST-FREQUENT GENETIC DEFECT
November 22nd is the International 22q11 Day, a European movement to raise awareness about 22q11.2 deletion syndrome by illuminating many buildings in red across Europe.
22q11 deletion syndrome
The 22q11.2 deletion syndrome is a chromosomal disorder that affects approximately 1 in every 3000 people. 22q11 Ireland has almost 200 members living with 22q11 deletion syndrome across Ireland and its numbers are growing.
22q11 can impact the body and mind in numerous ways, the most frequent of which include learning and behaviour difficulties, heart defects and hearing or feeding problems. The possible symptoms are very diverse, and everyone with the syndrome is affected differently.
The diversity of the symptoms of 22q11 patients makes a diagnosis very difficult. In fact, 50% of 22q11 patients are never diagnosed. Yet, an early diagnosis of 22q11 can lead to a much better life for people with 22q11 as earlier treatments of symptoms can curtail their severity. Besides, early diagnosis allows parents to better prepare the arrival of their child, it helps health professionals to better adapt their treatments and educators to better adapt the educational environment. Raising awareness with the public will thus improve the diagnosis and treatment of people with 22q11.
22.11 international 22q11 day has been gaining interest in the last few years. It is the first time this event takes place in Ireland. Several places supported 22q11 Day by illuminating their buildings The Mansion House and City Hall in Dublin, The Rock of Cashel, Civic offices Clonmel, Tipperary, Council Headquarters at Merchant’s Quay and Treaty City Brewery, Limerick.
22q11 Ireland is a member of 22q11 Europe, a network of 17 national organisations coordinating the 22q11 day. 22q11 Ireland aims to provide lifelong support for those impacted by 22q11, by welcoming and encouraging families living with 22q11.2 Deletion Syndrome with open arms and an empathetic ear, and by working to build a holistic care model that will help 22q11 patients and their loved ones throughout their lives.
We are delighted to announce our new website www.22q11Ireland.org is finally live.