In March 2018 I was a busy 58 year old primary school teacher, in Paris. I had a history of hashimotos disease and bothersome patulous eustachian tube. For some months I had had pain in various joints and in the cartilage in my ears and nose. I also had a persistent cough.
One evening I was overcome by severe pain in all my joints, I had difficulty walking and was overwhelmingly exhausted.
After several weeks, blood results showed a creatine level of 800. I was hospitalised and a kidney biopsy was carried out, a diagnosis of ANCA Vasculitis, anti MPO positive with severe acute kidney injury, was confirmed.
Treatment was administered immediately. I received pulsed intravenous cyclophosphamide and 7 sessions of plasma exchange, with intravenous corticosteroids and subsequently oral corticosteroids. The outcome was significant kidney damage with an EGFR of around 30ml/min.
I received a maintenance therapy with rituximab twice annually until April 2021 (almost 3 years). During that time I came home to Ireland to consult with doctor. I was very grateful for not only the friendly welcome but the extreme professionalism provided by doctor and his team.
I am eternally grateful to the medical staff of hospitals in Paris for providing the necessary treatment when I was first diagnosed with ANCA vasculitis, and their European colleagues, I believe strongly in the combined strengths of medical expertise alongside kindness and empathy! I have been impressed by his dedication to research and his belief in data driven diagnostics. I admire his interest in sharing his findings and collaborating with other practitioners throughout the world.
It is an enormous pleasure and privilege to be part of the Paradise Project. I believe this research project is one of the first of its kind to give a voice to patients and pay respect to their feedback and participation in this innovative research project.
