Today (29 December 2022) the HSE published the preliminary organ transplant figures for 2022 in Ireland.  Cystinosis Ireland welcomes the news that kidney transplant rates have increased on pre-Covid averages and acknowledges the gift of so many individuals and families in making these donations often at times of great sadness.  We look forward to the passage of the Human Tissue Bill through the Dail and Seanad at the earliest opportunity. The Bill has to has the potential to significantly increase kidney transplant and donor rates in Ireland if the legislation provides full resources for organ donor teams and public awareness supports.  Organ (specifically kidney) donation is a crucial element of therapy for people living with the ultra-rare condition cystinosis and is life-saving.

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.

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Contact Denise Dunne 01 687 5758