Meet the PNH community – New South Wales
Three people from New South Wales wish to share their PNH story with you. Click on the names below to learn more about each person’s unique experience.
20-year-old music artist and entrepreneur, Aaron was diagnosed with PNH in 2008 after experiencing sudden fatigue and dizziness, loss of blood and extreme cases of common, usually mild, illnesses. To date, Aaron has not let PNH hold him back – his visual marketing business is the most successful of its kind on NSW’s Central Coast and he is an internationally recognised musician and DJ.Read More..
Watch Aaron’s story here
Janette was diagnosed with PNH in 1994 and didn’t gain access to effective treatment until 2008. Before gaining access to treatment, Janette required monthly blood transfusions which caused iron to build up in her body, placing her at risk of kidney, heart and liver complications.
Jon was diagnosed with PNH and Myelodysplastic syndrome (MDS) in mid-2009. Since then, health complications associated with both diseases have snowballed, significantly compromising Jon’s quality of life. He has given up work and is now too tired to weed his garden or take his dog for a daily walk. When Jon’s mother passed away recently, he was too sick to attend her funeral. Read more…
If you would like to share your own PNH experiences on our site, please contact our Secretary, Jenny Sturrock on firstname.lastname@example.org