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  1. Personal stories
  2. Living with a blood disorder

Stories

PBI is honored to have had the opportunity to work with special patients and families and make a difference to their lives. Some of our patients have kindly agreed to share their personal stories. To read more about their journey, click on their story below.

Gemma's story

Gemma's story

No one wants to face it; I didn't look like a cancer patient. Read more

Published: 23rd February, 2023

Author: Bec Morgan

Andrew's story

Andrew's story

Andrew was diagnosed with myelofibrosis in 2021, an uncommon form of blood cancer affecting the bone marrow. Learn more about Andrew's story here. Read more

Published: 2nd February, 2023

Updated: 28th February, 2023

Author: Gina Rodgers

Ashley's story

Ashley's story

Ashley was diagnosed with mantle cell lymphoma mid-2012 and was in remission from December 2012 to October 2022. A Learn more about Ashley's story here. Read more

Published: 27th October, 2021

Updated: 12th January, 2023

Author: Ariane D'Souza

David's story

David's story

David first experienced a blood clot in 2004 whilst living in Hong Kong with his family. In 2008, David experienced a pulmonary embolism, which was misdiagnosed as bronchitis. Learn more about David's story here. Read more

Published: 26th October, 2021

Updated: 14th March, 2022

Author: Ariane D'Souza

Jamie's story

Jamie's story

Jamie was diagnosed with severe Idiopathic Thrombocytopenic Purpura (ITP) at the age of five. He tried all the conventional methods with little success. Learn more about Jamie's clinical trial story here. Read more

Published: 13th October, 2021

Updated: 1st February, 2022

Author: Ariane D'Souza

Janice's story

Janice's story

Janice was diagnosed with atrial fibrillation and has suffered from three strokes, with two occurring almost simultaneously. During her strokes she lost sight in both eyes for almost 10 minutes. Learn more about Janice's story here. Read more

Published: 6th October, 2021

Updated: 1st February, 2022

Author: Ariane D'Souza

Beverley's story

Beverley's story

Beverley underwent a CAT scan during her oncology treatment, her results returned and she discovered she had pulmonary emboli, which are blood clots in her lungs. Learn more about Beverley's story here. Read more

Published: 6th October, 2021

Updated: 1st February, 2022

Author: Ariane D'Souza

John's story

John's story

In 2006, John was diagnosed with chronic lymphocytic leukaemia, a rare type of cancer of the blood and bone marrow. He spent several years having chemotherapy with mixed results as the cancer continued to return. Read more

Published: 4th August, 2021

Updated: 1st February, 2022

Author: Bec Morgan

Thomas' story

Thomas' story

Following months of consultations with various medical practitioners, Thomas was diagnosed with a cancerous growth in his lower back. Following this diagnosis and the development of a treatment plan, Thomas commenced a program of therapy under the care of Haematologist Professor Ross Baker. Read more

Published: 4th August, 2021

Updated: 1st February, 2022

Author: Bec Morgan

Natalie's story

Natalie's story

In September 2016, Natalie experienced rib pain and trouble breathing for 24 hours following a surgical operation. Read more about Natalie's story here. Read more

Published: 5th November, 2020

Updated: 1st February, 2022

Author: Jake Harfield

Alicia's story

Alicia's story

Alicia was a very active and healthy 19-year-old when during a social game of netball, she rolled her ankle and was diagnosed with ligament damage. Learn more about Alicia's experience here. Read more

Published: 28th October, 2020

Updated: 28th May, 2022

Author: Jake Harfield

George's story

George's story

For years George had known his white blood cell count was too high, but as it was just outside the normal range. After being referred to Professor Baker, George was diagnosed with chronic lymphocytic leukaemia (CLL). He joined a clinical trial in August 2015 and two years later, George was completely free of CLL and leading a normal lifestyle. Read more

Published: 20th October, 2020

Updated: 1st February, 2022

Author: Bec Morgan

Elie's story

Elie's story

When Elie was a young, fit and healthy 22-year-old he noticed a lump in the side of his neck. He went to his GP complaining of fatigue, insomnia, and severe itching. After being misdiagnosed with glandular fever and then a mystery virus, he received a call from his doctor. Read more

Published: 9th July, 2020

Updated: 28th March, 2022

Author: Jake Harfield

Samantha's story

Samantha's story

Samantha was diagnosed with TTP in 2016, an extremely rare blood disorder. Following her recovery in hospital, Samantha researched her condition and learnt of the ground-breaking research being done in this area at PBI. After meeting with Professor Baker, Samantha has gained new insight into TTP including the possibility of expanding her family. Read more

Published: 1st June, 2020

Updated: 1st February, 2022

Author: Felicity Barnes

John's Story

John's Story

“For the first time in over 50 years, I have had no bleeding issues – not even a bruise. Being able to participate in Perth Blood Institute’s clinical trial program has literally changed my life”. John was born in 1949 with severe Haemophilia A – a genetic deficiency in blood clotting Factor VIII. Read more

Published: 21st October, 2019

Updated: 27th October, 2021

Author:

Back to top

Showing 10 of 15

Latest

  • Gemma's story

    Gemma's story

    No one wants to face it; I didn't look like a cancer patient.

  • Myelofibrosis (MF)

    Myelofibrosis (MF)

    Myelofibrosis is an uncommon type of blood cancer that interrupts the body’s normal production of blood cells.

  • Andrew's story

    Andrew's story

    Andrew was diagnosed with myelofibrosis in 2021, an uncommon form of blood cancer affecting the bone marrow. Learn more about Andrew's story here.

  • Rare Disease Day 2023

    Rare Disease Day 2023

    February 28 is Rare Disease Day. This global initiative provides an opportunity to increase awareness about rare disorders which can affect everyone.

Most read

  • What is thrombosis?

    What is thrombosis?

    Click here to learn more about thrombosis.

  • What are DVT & PE?

    What are DVT & PE?

    Click here to learn more about DVT and PE.

  • Antiphospholipid Antibody Syndrome

    Antiphospholipid Antibody Syndrome

    Click here for information about antiphospholipid antibody syndrome and how it can lead to thrombosis.

  • Work and Thrombosis

    Work and Thrombosis

    Click here to learn more about how work can increase your risk of thrombosis, and how to prevent it.

  • Contraception and Thrombosis

    Contraception and Thrombosis

    Click here to learn more about how certain contraceptives can increase your risk of dangerous blood clots.

  • Inherited Thrombophilias

    Inherited Thrombophilias

    Click here for information about genetic conditions that can increase the chances of thrombosis.

  • Investigators

    Investigators

  • Travel and Thrombosis

    Travel and Thrombosis

    Click here to learn about how travel can increase your risk of developing dangerous blood clots.

  • Participate in a clinical trial

    Participate in a clinical trial

    PBI's Clinical Trials Unit actively runs numerous clinical trials and performs state-of-the-art research into bleeding and clotting disorders and blood cancers.

  • Pregnancy and Thrombosis

    Pregnancy and Thrombosis

    Click here to learn about how pregnancy can increase your risk of thrombosis.

Tag cloud

Acute Myeloid Leukaemia ADAMTS13 blood clots cancer contraceptive Follicular Lymphoma haemophilia A Microangiopathic Thrombocytopenia multiple myeloma oral contraceptive pregnancy Relapsed Multiple Myeloma small vessels thrombosis Thrombotic Thrombocytopaenic Pupura TMA
Donate today

Donate today

Please help to make blood disorders a thing of the past. Every amount is vital to our research, no matter how large or small. Read more

Donate Fundraise

Published: 18th February, 2020

Updated: 9th February, 2023

Author:

Elie's story

Elie's story

When Elie was a young, fit and healthy 22-year-old he noticed a lump in the side of his neck. He went to his GP complaining of fatigue, insomnia, and severe itching. After being misdiagnosed with glandular fever and then a mystery virus, he received a call from his doctor. Read more

Published: 9th July, 2020

Updated: 28th March, 2022

Author: Jake Harfield

Purchase a Entertainment™ Digital Membership and support PBI

Purchase a Entertainment™ Digital Membership and support PBI

Gain access to over 20,000 local & national offers and support Perth Blood Institute at the same time. Read more

Published: 2nd August, 2021

Updated: 25th January, 2022

Author: Bec Morgan

Perth Blood Institute benefits from family ties

Perth Blood Institute benefits from family ties

The family of a Perth mum who has a blood condition so rare that she’s almost one in a million is rallying behind her – and gaining support from numerous work colleagues. Read more

Published: 21st February, 2022

Updated: 4th April, 2022

Author: Felicity Barnes

Celebrating World Health Day

Celebrating World Health Day

In recogntion of WHD 2022, find out how our patients look after their physical and mental wellbeing while living with a blood disorder. Read more

Published: 28th March, 2022

Updated: 8th February, 2023

Author: Felicity Barnes

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