I am 33 years old and was recently diagnosed with PNH. After having headaches, feeling tired, breathless and two infections within a short period of time I booked an appointment at my local GP to get my bloods taken. Within a few hours the nurse rang me telling me to go straight to hospital and to take an overnight bag as my haemoglobin was down to 50. I waited in A&E that night until a bed was available in the ward and was admitted in the early hours the next morning.
I stayed in hospital for the next four days being moved from the ward I was in to the COVID ward as I had COVID a couple of weeks prior and even though I was out of the isolation period they were concerned that with my low platelets I could still be a carrier. During my stay more bloods taken, I was given a CTG, a chest X-ray, an ultrasound, two transfusions and a bone marrow extraction. As one of the nurses said I was getting a ‘full MOT’ as they tried to discover the cause of the problem. Once my haemoglobin levels were increased, I was discharged from hospital and able to return home while we waited for the bone marrow results.
I was diagnosed with myelodysplastic Syndrome (MDS) and referred to an MDS specialist at a nearby hospital who after monitoring my blood for several weeks diagnosed me with PNH a rare blood disorder that I had never heard of before. He referred me to the local PNH specialist and the PNH team in Leeds where they confirmed that I did have PNH with a clone size of 90% and needed to start treatment as soon as possible. Although the doctors had explained PNH I was still very unfamiliar with it and started joining Facebooks groups relating to it, webinars and through these I was put in touch with other people who also had PNH who I was able to share my experiences with and ask any questions I might have.
In December 2022, I went to hospital and received my first dose of ravulizumab (Ultomiris) alongside side two meningitis vaccinations. I was able to receive my second treatment at home on the 21st of December and received my next meningitis vaccine 4 weeks after at the local hospital. Since starting treatment I still feel tired and breathless but I have less headaches and I am hopeful with a few more treatments my symptoms may improve. I am still being monitored for a bone marrow transplant and although this is all very new and scary I now have answers to why I was feeling unwell, I have the support of my loving family, friends, medical team, PNH groups including PNH Support and feel more prepared as a begin my PNH journey.