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EHA ITP Patient Advocate – Ella Sophia Ellis tells her story
Ella Sophia Ellis – Reflections on the European Haematology Association 2024: A Journey in Advocacy and Connection.
Earlier this year, I had the privilege of attending the European Haematology Association (EHA) Annual Conference in Madrid as part of the Young Patient Advocacy Programme (AYA). Representing the ITP Support Association (ITPSA) was a deeply rewarding experience and I am immensely grateful to Mervyn, and the ITPSA for providing me with the opportunity. It was both an both an honour and privilege to advocate for young children and adults with ITP.
My journey began with attending a training trip in Munich, which was part of the comprehensive advocacy training package offered by the AYA/EHA. The two-day event equipped me with the essential skills, knowledge and resources on patient advocacy, setting the stage for the conference in EHA Conference in Madrid.
At the EHA Madrid Conference, I had the chance to meet with representatives from global pharmaceutical companies that develop critical medicine for the treatment of ITP. Many of these companies are based in the U.S and China, and so offering a broader perspective on global ITP communities. Our discussions offered useful information on the development of accessible therapies to treat ITP around the world. Here, I was able to apply my patient-advocacy skills to good use; challenging the un-met needs of young patients with ITP. For instance, we discussed whether young patients are adequately represented at all stages of drug production progress and how our specific concerns about treatment-related side effects are addressed. These conversations were all a really valuable part of the experience, boarding my own understanding of challenges and innovation in medical intervention and treatment of ITP.
The Conference also provided a meaningful opportunity to connect with other young patients from across Europe, diagnosed with various haematological diseases, including Leukaemia and Sickle Cell disease. Sharing our experiences and stories throughout the advocacy programme was incredibly moving and only re-affirmed the importance of patient advocacy for young adults and children.
One of my absolute highlights of the experience was meeting Rhona for the first time. Diagnosed with ITP at 18 years old, Rhona also attended EHA Conference on behalf of ITPSA. Rhona and I immediately bonded over our shared experience of diagnosis and managing a chronic illness from a young age. Our connection felt like finding a long-lost friend, and we’ve stayed in touch ever since. I’m looking forward to visiting her in Edinburgh later this year! I only wish we had met earlier in our ITP journeys; it would have been wonderful to have had our unique bond earlier on in both our diagnosis’. But, we’ve found each other’s now and that’s what matters.
In summary, my experience of the AYA programme and EHA Conference has been incredibly transformative. I have gained invaluable skills as a patient advocate and have come to understand the importance of amplifying young voices in discussion about chronic illness like ITP. Our collective voices can drive significant change, improving treatment and care outcomes for many. I am very excited to continue this important work and advocate for our ITP community.
Thank you to everyone who supported me on this journey.