June 2021

Perth mum and Stirling resident Samantha Minniti has a blood condition so rare that she is pretty much one in a million.

Ms Minniti was diagnosed with the rare blood disorder Thrombotic Thrombocytopenic Purpura (TTP) in 2016, an illness which sees her blood create clots in the small vessels around her body, which can then stop oxygen flowing to essential organs like her brain, kidneys and heart.

But ironically, after undertaking her own global research for treatment options about her illness – which affects three in one million people every year, Samantha discovered the latest ground-breaking research being carried out was taking place in her home town, at West Perth-based Perth Blood Institute (PBI).

“Because TTP is so rare I felt quite isolated, but after doing some research and discovering PBI, I gained some comfort from the fact that I could talk about my illness with local medical professionals who have been able to listen, understand and support me,” she says.

“While my experience has been quite scary and TTP will continue to be something I have to live with daily, I have wanted to give back to PBI by donating my blood for ongoing research, and starting to fundraise and also gain awareness about the research that the Institute is currently undertaking.”

Consultant Haematologist Professor Ross Baker, Founding Director of PBI, says the not-for-profit organisation’s research division is leading the Asia-Pacific region in Thrombotic studies for Thrombotic Thrombocytopenic Purpura, and the specific gene at the centre of the condition.

“The cutting-edge research being undertaken by Perth Blood Institute has standardised a method for testing to help detect this gene, which has led to a proposal for further research on the disease and a global standardisation study,” explains Prof Baker.

“I was very pleased to meet with Samantha to discuss her condition, and was able to answer some of her questions and put her in touch with one other TTP patient which has helped her to gain new insight into her condition and some reassurance.

“At PBI, we are working hard on additional innovative breakthroughs, like the genetic testing we’ve discovered for TTP, to ultimately advance haematological research into common and rare fatal blood diseases, and strive to ensure blood disorders and malignancies become a thing of the past.”

Perth Blood Institute is currently running an end of financial year appeal to raise funds for further breakthroughs in medical treatment for blood disorders and malignancy.

Tax-deductible donations can be made online. 

PBI is a charitable, not-for-profit, haematological research institute. Based in West Perth, the organisation undertakes research into blood related disorders, delivers blood related clinical trials and provides an education service to the community and professionals on blood conditions.

The organisation is focused on providing outstanding patient care to people diagnosed with blood conditions – including blood cancers, bleeding and clotting disorders – through an ethical and sustainable approach.

ENDS

Media Contact: Ruth Gourley, Shine Communications, Mob: 0434 330 384