ITP Patient Stories, News

EHA ITP Patient Advocate – Rhona Bowie tells her story

Back in January we nominated two young ITP patients from the ITP Support Association, Rhona Bowie and Ella-Sophia Elli to be part of the EHA Adolescent and Young Adult (AYA) Patient Advocates Training Program. Here is Rona’s story of her journey.  

EHA ITP Patient Advocate – Rhona 

My time at the EHA Conference in June was both impactful and fulfilling. Though the days were long, and at times overwhelming, it was an incredible experience. The conference itself was filled with knowledgeable professionals willing and open to have frank, and often difficult conversations, regarding all thing’s haematology. It is essential for patients, health care professionals and organisations to have these spaces to foster learning and growth. The talks that I attended showed exciting new progress in medications for ITP, especially in young people, and helped me to expand my knowledge about other haematological disorders. Being there as a Patient Advocate, I was able to see discrepancies in the research, which rarely – if ever – looked at quality of life, side effects of medication and the impacts on patients’ mental health. The toll on patients can be difficult, often having to advocate for ourselves and bear the emotional burden of continually explaining the wide variety of impacts that ITP (or any other haematological disease) can have on us. I hugely benefited from the Patient Advocate training that allowed me to develop advocacy tools and be better equipped for these important discussions. Meeting the AYA Taskforce was a great privilege and I’m both hopeful and excited to see the valuable work that they do over the next few years.  

ITP, especially when diagnosed at a young age, can be an incredibly isolating experience. It often feels like you are against the world, so to be in a room full of other young patients who have similar stories was a truly gratifying moment. I was able to learn so much more about other people’s illnesses and form a community with other patients – something that is invaluable to me. Meeting Ella was very special, and only solidified my belief that we are not alone with ITP. The EHA is an experience that I would never have been able to have without the ITP Support Association and Mervyn kindly recommending me. I am very grateful to have been a part of such essential conversations surrounding ITP and patient advocacy. The whole experience has inspired me to continue my advocation journey and I’m looking forward to seeing where that takes me next.  

Rhona Bowie