22q: What’s that then?
Guests: Anne and Áine Lawlor
Anne and Áine Lawlor talk to us about the rare disease 22q and what educators need to know about it.
Anne Lawlor is one of the founding members of the 22q11 Ireland Support Group. The group, set up in 2007, supports Irish families affected by 22q deletion syndrome. 22q11.2 deletion syndrome is caused by small missing piece on the ‘q’ arm of the 22nd chromosome. Children born with 22qDS have complex medical, educational and social care needs over the life-span. Varying effects from the deletion range from congenital heart defects to speech and language problems. Many children with 22q11.2 deletion syndrome have learning disabilities and mental health issues. Dedicated to raising awareness for this poorly understood and under-recognised condition Anne completed a Masters in Management of Community and Voluntary groups and works with 22q11and works with 22q11 Ireland to develop integration across health & social care and education domains.
Áine Lawlor is a person living with 22q11.2 deletion syndrome. She was diagnosed in 1998 at aged 15 and throughout her life has faced the many challenges that go along with living with this relatively common 'rare' condition. Áine is a Special Olympian and was a participant in the world games when they were held outside of the USA for the first time in 2013. These days Áine is likely to be found in the bowling alley pursuing her passion for the game. She is a valued member of the 22q YEEP (Young Experts by Experience Panel) and with her online presence, participation in research and giving presentations at conferences she has become well known for her ambassadorship in the global 22q community. Áine lives at home with her mum Anne and her beloved dog Honey.
Music Credit: https://www.purple-planet.com