Many of you have had the pleasure of meeting or hearing from Patricia. While she joined ITP Australia in early 2022, her ITP Journey started many years earlier. Read her story here.
In the Beginning
I have been living with chronic Immune Thrombocytopenia (ITP) for 42 years. A rare autoimmune condition that can be as difficult to pronounce as it can be to live with. During this time I have been in and out of remission and have had to learn to adapt to the roller coaster ride of living with ITP. This has resulted in a strong will to not be defined by my condition but to learn to live with it, with a strong focus on quality of life. It has resulted in qualities of resilience and determination and an ability to learn to roll with the ups and downs of the challenges that come with living with a rare disease.
I am driven to continually learn more about ITP, and forty-two years on there is still more to learn. I refer to ITP websites such as ITP Australia, the Platelet Disorder Support Association, the UK ITP Support Association to name a few to keep up to date with the latest ITP research, treatments and developments in the world of ITP. I subscribe to a variety of global ITP organisations, listen to webinars, attend ITP conferences and ask questions of my ITP Specialist. I have also learnt a great deal through the personal stories shared by fellow ITP patients.
I continue to use a variety of means to raise awareness for ITP including, posting information on my social media platforms, wearing my ITP Australia Awareness Pin, fundraising for ITP Australia and taking part in annual ITP Awareness Week activities during the month of September.
I was diagnosed with ITP at The Royal Children’s Hospital in Melbourne in 1979. I presented at the Emergency Department with gastroenteritis symptoms but was also covered in large multiple bruises at the time, so a full blood count was ordered. The results showed that I had an extremely low platelet count of 6, and there began my ITP journey. However, I had been presenting with large bruising for a few years before receiving an ITP diagnosis. My GP had not followed up on any possible causes for my bruising and bleeding and put the bruising down to me being a clumsy child. This experience highlighted the importance of receiving a second opinion.
From Steroids to Splenectomy
From 1979, steroids were the first line of treatment. As a 12-year-old it was quite daunting experiencing many of the common side effects associated with steroid treatment. Going through adolescence was challenging enough let alone throwing in many of the unwanted side effects of Prednisone. I had my spleen out in 1979, which required major surgery back then, with a week spent in hospital, followed by a month off school. The splenectomy put me into remission until my early twenties. From then on I had intermittent relapses of ITP triggered by infections. Throughout this period steroids remained an effective treatment to keep my platelet counts above 60.
Coming out of remission in my early twenties came as a shock as the splenectomy had been successful in keeping my platelet counts in normal ranges for many years. I reached out for further support under the care of my new GP, who thankfully had experience in treating ITP patients to help and support me with this transition. Back then there was no ITP for Aussies Facebook support group, or an ITP Australia organisation to reach out to for up-to-date information and support. I felt quite isolated. Fortunately, myself and fellow ITP patients within Australia now have access to both these valuable resources.
Pregnancy and Childbirth
Considering options to start a family came fraught with uncertainty as to the impact of my ITP on a potential pregnancy. I consulted with my GP and haematologist as to the possible complications and decided to proceed with a specific plan. During my pregnancy in 1999 I required treatment with steroids and a course of IVIG as my counts sat around 20. I experienced severe headaches after IVIG. I decided to take very early maternity leave due to my low platelet counts, and a desire to not be in a school environment that would make me more susceptible to contracting viruses etc. My son was born by C-section due to my low platelet counts. He had thrombocytopenia for several days after his birth, which was very distressing as he had to have his platelet count checked daily, and my platelet counts were still low at the time. Thankfully his thrombocytopenia resolved itself after several days.
Meeting fellow ITP Patients
Another life-changing moment in my journey was attending the PDSA ITP Regional Meeting in Melbourne in 2018. This was the first time I had met other ITP patients, their caregivers and family. This allowed me to forge connections and friendships with the ITP community which have continued to support me till today. The meeting provided an opportunity for me to grow in my understanding of ITP and to connect and share stories with other ITP patients who understand what it means to live with this rare disease.
Refractory to Steroids
There was no change to my ITP treatment plan until I returned from an overseas trip in September 2018. At this time, I noticed clear indicators of a low platelet count. I attended my regular medical clinic and was seen by another GP as my usual GP was on leave. I had a blood test and was asked to return in a few days to review the results. The GP had no previous experience with ITP patients and underestimated the seriousness of my symptoms. On the 12th of September I received an early morning phone call from the same GP advising me I had a platelet count of 3. Her demeanour had dramatically changed from the day before and she told me to get to the Emergency Department of the Alfred Hospital in Melbourne as quickly as
possible and that I ring for an ambulance to transport me. This experience again highlighted the importance of promoting a broad awareness of ITP amongst first line practitioners.
I presented at the hospital where a battery of tests were conducted. I was then released a number of hours later with a platelet count of 18 with a plan to have a follow up blood test while starting on a dosage of 50mg of Prednisone. Given my past experience, I expected an efficient response to steroids. Unfortunately, this was not the case. My counts remained in the high teens to the low twenties for more than a week. The GP on advice from Alfred Haematology increased my steroid dosage with no further improvements to my platelet counts.
Throughout October a process of elimination was adopted to rule out possible medical reasons for my low platelet counts. I underwent CT scans to eliminate certain cancers, had a bone marrow biopsy and a nuclear Heat Denatured Red Blood Cell Scan to rule out the possibility of accessory spleens. At this point my haematologist explained that I was refractory to steroids and that I needed to consider other treatment options like Eltrombopag, a TPO-RA which I had never heard of before.
I wasn’t emotionally prepared to try other treatments as steroids had always been my go-to. I felt overwhelmed by the possibility of considering other treatments which were expected to be ongoing in nature.
In the meantime, I had reached out for support from Danielle Boyle the founder and CEO of ITP Australia, and she recommended that I seek an appointment with the ITP Specialist Professor Huyen Tran at the Alfred Hospital. I arranged this shortly after and Danielle followed up with me to ensure I had sought out an expert ITP specialist who could provide me with a more specialised level of care.
My first consultation with Professor Huyen Tran led to a more stable and consultative approach to the future management of my ITP. I felt an immediate ease and connection between myself as a patient, and Professor Tran as my clinician. I felt my perspective as an ITP patient was listened to and taken into consideration in formulating a future treatment plan. Professor Tran arranged for me to see him at his rooms rather than the outpatient clinic at the hospital which helped make my clinic appointments less confronting. The patient centred approach provided me with the opportunity to have an active role in decision making, lessened my anxiety while actively contributing to an overall improved quality of life.
Second Line Therapy: TPO-RA’s
In November of 2018 I started using the TPO-RA Eltrombopag, however, by January 2019 it did not produce the results both Professor Tran and I were hoping for. I was disappointed that this treatment did not work, as I appreciated the convenience of a tablet-based treatment.
The prospect of beginning a new line of treatment that was more invasive resulted in my anxiety levels rising. I can only describe it as feeling like you are on an emotional roller coaster.
In mid-January 2019 I began taking Romiplostim, another TPO-RA which needs to be administered via weekly subcutaneous injections with dose adjustments based upon platelet count response. This presented a new set of complications. As I have a fear of needles my husband was taught by hospital nursing staff how to inject me at home which took several weeks. I have experienced varied levels of success with this treatment as my platelet counts have fluctuated from 19 to 148 over nearly three years of using Romiplostim with counts sitting just under 50.
Attending the Inaugural ITP Australia Patient Meeting
The inaugural ITP Australia Patient Meeting on Saturday 6th July 2019 provided another valuable opportunity to reconnect with ITP patients, their caregivers and family. It also facilitated the opportunity to be educated on the latest advancements with ITP both in Australia and globally by the presentations of the esteemed array of ITP experts who presented at the meeting.
Joining ITP Australia
In 2022 I was given an incredible opportunity to join the team at ITP Australia. I am looking forward to working together with this amazing team to help continue ITP Australia’s important mission of supporting and advocating for ITP patients and carers via a multitude of approaches. Not to mention I get to work with the incredible Danielle Boyle, an inspiring CEO, fellow ITP patient and friend.
Finally, I would like to thank my support network of family, friends and fellow ITP patients who have been and still are part of my ITP journey. Your unconditional love and support have given me hope and strength and have seen me through some of the most challenging times. Thank you for being my silver linings.