Carmen’s PNH Journey

My name is Carmen, and my PNH journey began in February 2023.

In August 2022, following a trip to Africa, I became severely unwell while on holiday. When I returned home, I was admitted to hospital and diagnosed with sludge in my gallbladder, which resulted in a cholecystectomy (gallbladder removal). At the time, I didn’t realise this could be linked to something more.

Over the following months, I began to experience severe fatigue and noticed blood in my urine. This led to another hospital admission, where I spent two weeks undergoing extensive testing. In February 2023, I was diagnosed with PNH, with a clone level of 95%. I was also suffering from glandular fever at the time, which had triggered a significant spike in my condition.

Shortly after my diagnosis, I developed my first blood clot in my arm—an incredibly frightening experience and the beginning of my treatment journey.

Since then, I have been treated with ravulizumab. This treatment has been truly life-changing, allowing me to regain my independence and live a mostly normal life.

Despite the challenges, I have remained determined not to let PNH define me. Since my diagnosis, I have proudly completed my university degree with honours and have continued to prioritise my health and fitness, even going on to compete in hybrid fitness competitions.

My journey is still ongoing, but thanks to the incredible support I have received from PNH Scotland, this cause now holds a very special place in my heart. It’s something I am passionate about, and I am committed to helping raise awareness and support others facing similar challenges.