The story of Donal O' Shea
I was diagnosed with a frequently debilitating rheumatic condition Ankylosing Spondylitis (A.S.) in the UK.
A prerequisite to having A.S, is that one must have a specific antigen (HLA B27) This was confirmed in the UK through the NHS and on return to Ireland, through the HSE.
However the HSE overturned my diagnosis of A.S. on three seperate occasions prior to confirming it again ten years later.
This has caused a trail of destruction on numerous fronts as my anti-inflammatory medication was withdrawn!
The year after my diagnosis of A.S. was reaffirmed, I collapsed. This led to I receiving an internal cardiac device (ICD)
Due to various complications, the ICD had to be removed on five occasions in three years, any of which I was advised could have proved fatal, and I had to sign accordingly.
I received the high end biological medication Humira, which I take twice in the month, nine years after the European Health Agency approved it for A.S.
I was added to a HSE Chronic Disease management (CDM) program in 2022 and a HSE rehabilitative program through Exwell medical in 2024.
There needs to be far greater alignment of policies, with a much more holistic approach within the health system.
With the appropriate commitments by the State to comply with its legal obligations on ratifying the UN convention on the rights of persons with disabilities (UNCRPD) in March of 2018, the enforcement of Human and civil rights together with dignity, could have been the foundations to comply with primary aspects of the convention and advance each of the other aspects in an incremental manner!
I received a second Global award at the Bett Excell centre in London in the category; social emotional, mental health and well being in 2025.
In 2024 I received a Global award for Social Impact at the UNESCO HQ in Paris.
I was also shortlisted for excellence in ESG for the Relocate Think Global awards and as a National Leader in 2024