After Aine's diagnosis I was given a leaflet for support group in UK ...little has changed
Irish Sunday Mirror|February 28, 2021
Mum blasts lack of help dealing with rare diseases
EMMA McMENAMY
After Aine's diagnosis I was given a leaflet for support group in UK ...little has changed

A MOTHER whose daughter was born with a rare disease has hit out at the lack of support in Ireland.

Aine Lawlor, 37, was born with 22q11 deletion syndrome – also known as DiGeorge syndrome – and was only diagnosed at the age of 15 after several years of tests.

The condition is caused by the deletion of a small part of chromosome 22 and as a result, Aine suffers with multiple health issues.

Her mum Anne is speaking out on Rare Diseases Day which aims to highlight the need for support for the estimated 6% of the population living with a rare condition.

Around one in 20 people will live with a rare disease at some point in their lives and most have no cure.

Mum-of-two Anne said all she got following Aine’s diagnosis was a leaflet for a support group overseas.

She told the Irish Sunday Mirror: “When Aine was diagnosed in 1998 I was handed a leaflet about a support group in England.

“There was no Facebook or social media back then so you were twice as isolated.

Esta historia es de la edición February 28, 2021 de Irish Sunday Mirror.

Comience su prueba gratuita de Magzter GOLD de 7 días para acceder a miles de historias premium seleccionadas y a más de 9,000 revistas y periódicos.

Esta historia es de la edición February 28, 2021 de Irish Sunday Mirror.

Comience su prueba gratuita de Magzter GOLD de 7 días para acceder a miles de historias premium seleccionadas y a más de 9,000 revistas y periódicos.

MÁS HISTORIAS DE IRISH SUNDAY MIRRORVer todo