💾 Archived View for eir.mooo.com › nuacht › lui16990848186.gmi captured on 2023-11-04 at 12:06:58. Gemini links have been rewritten to link to archived content
-=-=-=-=-=-=-
Jasmin Griffin, 4 Nov
A STUDY conducted by the University of Limerick (UL) has shed light on
the staggering economic burden faced by those suffering from the
excruciating skin condition known as epidermolysis bullosa (EB) in
Ireland.
The research reveals that the cost of caring for an EB patient in
Ireland exceeds €130,000 per year, placing an immense financial strain
on families.
EB is an extremely painful and rare genetic disorder that affects
approximately 300 people in Ireland.
It is characterised by the absence of essential proteins that bind skin
layers together, leading to severe blistering and open wounds even from
minor friction or touch.
[ilim-stock-University_of_Limerick_UL_10-1646240284712.jpg--candidate_f
or_ul_chancellor_withdraws_name_from_consideration.jpg?1646240289442]
Proposed candidate for UL chancellor withdraws name from consideration
The new findings demonstrate that the estimated cost of EB to families
is €130,021 per patient annually. This cost encompasses various
expenses, including wound management, frequent GP visits,
hospitalisation, and even early retirement.
Comparing Ireland to other countries, the research report titled Life
with EB in Ireland, has prompted calls from the charity Debra, which
supports families affected by EB, for the government to establish a
€400,000 bandage scheme akin to those in Spain and Australia.
This would provide a much-needed lifeline, as specialised bandages can
cost thousands of euros each month, especially affecting those without
medical cards.