Meet the PNH Community – Victoria

Six people in Victoria would like to share their PNH story with you. Click on the links below to learn more about each person’s unique experience.

Belinda

Dairy farmer and grandmother of four, Belinda has been living with PNH for more than 20 years. For the last 17 years, Belinda has been treating her PNH with regular blood transfusions, but has recently had access to more effective treatment. Belinda says she feels as though her life has been given back to her.

Jenny

Jenny was diagnosed with PNH in January 2010 after a sudden collapse and subsequent emergency medical treatment while in Sydney on a business trip. The diagnosis took seven days. Jenny and her husband Lucas want nothing more than to start a family, but cannot do so until affordable access to PNH treatment becomes available. Read more…

Linda

In 2005, Linda was living life like any typical adult – she had a full-time job, a busy social life, was studying part-time and had just bought a house with her partner. However, Linda’s life spiralled into devastation when she was diagnosed with PNH in June 2005. Read more…

Mark

Father of two, Mark was diagnosed with PNH in 2001 and has been taking part in a clinical trial of treatment since 2005. Mark believes the treatment has made an enormous improvement in his quality of life and life expectancy; and is fearful of what would happen without it. “All I want to do is kick a footy and run around with the kids,” says Mark.

Eve

At just 15, Eve’s life changed from that of a normal teenager.  She’s missed on lots of things most people her age get to experience. Pain and fatigue have prevented her playing sport and every day became a battle until being admitted to the Soliris Compassionate Use Program.Read more…

If you would like to share your own PNH experiences on our site, please contact our Secretary, Jenny Sturrock on info@pnhsaa.org.au