Lynn’s PNH Journey

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. The specialists believe that I may have had PNH for up to 10 years and although I had some of the symptoms throughout those 10 years the PNH went undiagnosed up until then. 

As we look back over the years, we realise how fortunate I have been that my symptoms were relatively mild and did not impact my quality of life. Being diagnosed was a very emotional and worrying experience. However, discovering more about my illness, and how it could be managed, we chose to focus on the arrival of our daughter. Our daughter arrived safely with no complications and we have since gone on to have a second healthy child with no complications.  I have received several types of treatment over the years. This has allowed me to maintain a better quality of life, return to work on almost a full-time basis and attend gym classes several times per week.