Meet the PNH community – Queensland

Three Queenslanders wish to share their PNH story with you. Click on the names below to learn more about each person’s unique experience.


Dagmar, 38, was diagnosed with PNH while pregnant in 2003. The disease made Dagmar’s pregnancy and birth experience tricky, but she gave birth to a healthy little girl, Esra, who is now seven years old. Dagmar says that PNH puts a lot of strain on her family, particularly those who remain in her home country, Switzerland. Read more…

Ian & Debbie

Ian, 41, was diagnosed with PNH when he was just 18 years old. The ultra-rare, life-threatening blood disease has left the husband and father of two fatigued, depressed, riddled with pain and unable to work. Ian’s wife, Debbie says that before their wedding, people tried to talk her out of marrying Ian because of his illness. However, Debbie is determined to do what she can for the man she loves. Read more…


Jacqui has two chronically ill daughters – Linda, who is living with PNH and Glyn, who has rheumatoid arthritis. Jacqui is angry that the Government funds treatment for the debilitating, though not fatal, arthritis, while Linda is left to die because her disease is less common. 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


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