Lesley’s PNH Journey

I was diagnosed with PNH in 2007 after a year and a half of tests and wrong diagnoses. On my diagnosis day I was told there wasn’t much known about PNH and I would get on average 10 years of life. I didn’t know that this was out-of-date, incorrect information. I was so severely exhausted by this point that I had to be carried upstairs and needed help getting dressed and undressed. On very bad days, when my muscles were particularly weak, I needed help turning in bed.

At that time the only treatment options available were blood thinners and blood transfusions which did not improve my quality of life. After a year I started to reject my blood transfusions which meant I was granted special access by the Scottish Government to the drug Eculizumab. Eculizumab was the first drug trialled in Scotland for PNH. Being on the correct treatment was incredible and gave me my life back. Over the next couple of years my energy levels continued to increase and all my symptoms disappeared. I participated in a clinical trial for Ravulizumab in 2019 and only stopped monoclonal antibody infusions in 2022 when my clone level fell below 10%.  

I thought I had gone into remission from PNH but unfortunately my bone marrow had evolved and I went on to develop acute myeloid leukaemia (AML) which is a serious blood cancer. In February 2024 I had a stem cell transplant as this was my only option for survival. I was very fortunate as a stem cell match was found for me. The process was long and difficult but I am extremely grateful to my amazing transplant team who cared for me throughout. I now have no detectable PNH cells or leukaemia cells.

I set PNH Scotland up in 2011 to make sure PNH patients get the support, information and treatment they need and to ensure nobody ever feels alone.