Cystinosis Ireland is a member of the Irish Donor Network, a network of patient advocate organisations, which has campaigned for many years for this legislative change.
“At the end of June 2022, close to 400 people were on the waiting list for kidney transplant*, an important therapy for cystinosis patients, the majority of whom are children. This Bill has the potential to change the lives of those patients,” said Mick Swift, chair of Cystinosis Ireland.
What is Cystinosis
Cystinosis is an ultra-rare, life-threatening, disease caused by a genetic mutation, wherein the amino acid cystine builds up in every cell of the body. This in turn leads to early cell death, which slowly destroys all the organs and muscles of the body. The kidneys are the first organs affected making dialysis and kidney transplant necessary. There is a treatment that helps to slow down this deterioration, but it causes severe side effects, needs a round-the-clock dosing regime and does not halt the progression of the damage. Even on this treatment, as the disease progresses, other complications occur as children grow and can include muscle wasting, difficulty swallowing, breathing problems, ocular issues, diabetes, hypothyroidism, late puberty, dementia, blindness, and death.
Cystinosis Ireland is a patient support and research funding organisation.
More information see www.cystinosis.ie
Contact Denise Dunne 01 687 5758