Susan Duffy
My first major symptoms of MND arrived in March 2020, during the pandemic. After months of diagnostic tests, appointments and relentless telephone calls I received a MND diagnosis in October 2020. My progression has since spread to other limbs, and I have moved from a walking stick to a rollator and now a powerchair.
My family are a great support, I enjoy spending time with my husband (Pat), two sons (Gerard and Martin) and I am blessed with my two grandchildren, Pat and Gracie. I receive full time care from my two sons. I have led an active life with very good health. I have worked hard in a local factory and as a sacristan in my local Church. I share a deep faith with my family.
I have participated in a biomarker study and two clinical trials, the latest with MND Smart in Craigavon. There is no specialist care centre in Northern Ireland, however I have received an excellent level of care from a range of medical professionals including my neurologists and occupational therapist. Unfortunately, the level of understanding regarding symptoms and potential treatments within primary and secondary care is highly concerning. I am an ambassador for the Global Patient Council with the Centre for Information & Study on Clinical Research Participation.
Only one approved treatment exists for MND, this drug was approved almost thirty years ago. Unfortunately, MND is a broad condition, one treatment will not be effective for everyone. The role of precision medication and artificial intelligence will be key in the near future. The MND community are long overdue effective treatments, patients and their families should not have to fight for these. I look forward to a world without MND.
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