After Aine's diagnosis I was given a leaflet for support group in UK ...little has changed

Mum blasts lack of help dealing with rare diseases

- EMMA McMENAMY

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.