“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.”

“An initial diagnosis of Budd–Chiari Syndrome was made in 2009. At that point, all the information I was given focused on Budd–Chiari, because despite a lot of blood tests there wasn’t a definite reason for the blood clots to have formed — every test came back negative. With no clear cause, it was put down to being ‘just one of those things,’ and I became a regular patient at the Royal Infirmary of Edinburgh.”

“In May of 2011 my husband and I were excited to discover that we were expecting our first child. We started down the path that every couple expecting a child travels, including the usual hospital appointments. All appeared to be continuing as normal until I started to pass blood in my urine. I attended various appointments at the local hospitals until finally receiving a diagnosis of the rare, life-threatening, blood disorder known as PNH.”

“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 I didn’t know that this was out-of-date, incorrect information.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.”