I would like to take this opportunity to thank you for your support of the Perth Blood Institute (PBI). It is because of the generous contributions we receive from our PBI community that we can conduct medical research, provide information and education, and continue to offer West Australians the opportunity to participate in new clinical trials for both blood disorders and malignancy.

I am passionate about medical research and delighted to share that our research division leads the Asia-Pacific region in Thrombotic studies for the rare blood disorder, Thrombotic Thrombocytopenic Purpura (TTP) and the specific gene involved in the blood clotting process of this condition. PBI’s work has standardised a method for testing to help detect this gene. Our understanding of TTP has led to a proposal for further research on the disease and a global standardisation study.

We need more of these innovative breakthroughs to ensure blood disorders and malignancies become a thing of the past. This is the reason why we strive to advance haematological research into common and rare fatal blood diseases.

We are working towards a better understanding of the molecular basis of diseases, to develop new diagnostic tests and targeted therapies. An investment in medical research today will help to uncover the treatments of tomorrow.

I’m asking you to give what you can. Whatever you give, your donation will provide funding for researchers to advance new treatments and facilitate clinical trials. Every amount is vital to our research, no matter how large or small. Your donation ensures the development of next generation treatments and therapies, making an incredible difference today and into the future.

I would like to introduce you to Samantha, a 34-year-old Perth Mum. Samantha was diagnosed with TTP in 2016, occurring in about three people per one million. TTP is an illness where the blood clots in small vessels in the body which can stop oxygen flowing to essential organs like the brain, kidneys, and heart. With the excessive amount of blood clotting occurring, platelet numbers become low, therefore leading to bleeding problems.

Samantha noticed a rash; however she didn’t pay much attention to it. Then she started feeling unwell, and thought it best to see the doctor, still thinking it was a virus. As TTP has many unusual symptoms, including feeling tired and having a headache or fever, the doctor was unable to determine what it was. The rash could also be misinterpreted, as a group of pinpoint-sized purple dots (petechiae) on the skin is also a sign of TTP.

“Don’t ignore the signs like I did. I knew there was something odd happening, but I overlooked it, thinking it was a virus” Samantha

Diagnosis only occurred after a frightening moment when Samantha would not wake up and her mother called an ambulance. Samantha was in a coma for three days while the doctors conducted tests to determine what was the cause of her symptoms. On her initial admission to hospital Samantha’s platelet count was six, which is potentially fatal. The situation was so dire, her family were told to say goodbye and call the family priest.

The recovery process was very slow. It took nine days of plasma treatment to increase her platelet count to 150 and then Samantha could go home. Unfortunately, after treatment stopped Samantha’s platelet levels plummeted and she required hospitalisation again. Surgery was required and chemotherapy, followed by another eight weeks in hospital and four weeks as an outpatient of continued plasma treatment.

During Samantha’s time in hospital, one of the most difficult aspects was being away from her daughter. There was also the fear of relapse and being hesitant when performing certain tasks. Over time, Samantha has started to get back to normality with the support of her family, friends, and workplace. However, as there is no treatment, Samantha must regularly check for petechiae and any signs or symptoms associated with TTP, including check-ups with her doctor every six months.

As TTP is rare, Samantha researched the condition herself and searched globally for any relevant news or treatment options and support groups available. She found that most resources and centres associated with TTP were based in America or eastern Australia. After an extensive search across the world, to Samantha’s surprise her pursuit for any information on TTP led her back to Perth and to PBI and she learnt of the ground-breaking research being done in this area. 

Due to the rare nature of TTP it is difficult to find people with the same condition. Samantha has felt quite isolated as there isn’t anyone to speak with experiencing the same symptoms and perhaps similar fears. Fortunately, after discovering PBI, Samantha was comforted by the fact there was a place where she could talk about TTP with people who would listen, understand and support her.

 I met with Samantha to discuss her condition and was able to answer her questions including whether she should receive the COVID-19 vaccine. I was also able to put her in touch with one other TTP patient who has gone on to have children and manage her condition. Having another child has been something Samantha has wanted for a while but feared. Gaining this new insight into her condition has given Samantha reassurance and the possibility for expanding her family.

 “I didn’t feel so alone anymore” Samantha

 Understanding how rare this condition is introduced Samantha to the importance of research. As there are limited cases of TTP (especially in Western Australia), Samantha contributed to PBI’s research division by donating her blood to the bio bank study. Samantha continues to raise awareness through Facebook and started fundraising for TTP research.

Samantha’s experience has been scary and TTP will continue to be part of her daily life. However, she has found the journey very rewarding with the ongoing encouragement she receives from her friends, family, and the team at PBI.

Your generosity could one day benefit someone you know by providing breakthroughs in medical treatments and the gift of more precious moments with the ones they love. It is because of you that we will see more people like Samantha enjoying longer healthier lives, being able to spend more time with loved ones.

We are truly grateful for your generous support and for making this life-changing work possible.

Kind regards,

Ross Baker

Chair, Perth Blood Institute