Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, her work in the lab intersected with her health. This fueled her interest in involving herself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. Simultaneously she developed a passion for writing, sharing her research experiences and introspectively writing about life with a chronic disease.
When she became very ill in the winter of 2019 with an exacerbation of the bacteria in her lungs due to CF, these experiences and interactions with researchers gave her the confidence to leverage my voice – and pursue an experimental treatment called phage therapy. She sought out and coordinated her treatment directly with researchers at Yale University. Being one of a few patients in the US who had tried this therapy,
her experience was documented by the Associated Press. Because of the success of her treatment, she wanted to share about her experience to increase visibility for a viable alternative for other patients facing drug resistant infections. The exposure provided a platform from which she established herself as a patient advocate, publishing her experience, empowering other patients also battling infection, and inspiring the research community in further pursuit of phage research.
Since then, she has spoken publicly at various conferences, congressional meetings, to pharmaceutical companies, and to the FDA about the need for the development of novel therapies for the treatment of these antibiotic-resistant infections that thrive not only in her lungs, but which are becoming a significant global problem. Most recently, her patient journey battling antibiotic resistant infections was featured in a documentary titled the Silent Pandemic which brings to light the efforts from scientists and private initiatives around the world networking, forming alliances, and strategies to counter the advance of antibiotic resistance. She has been published in medical journals, including being a patient reviewer for BMJ and Pulmonary Therapy Journal, and serve on committees tasked in optimizing clinical trial protocols and research prioritization grant committees with the CF Foundation. She believes that understanding the patient experience is vital to both healthcare companies researchers, and the collaboration with solution focused patient advocates facilitates both the disease community and all other stakeholders to advance medical progress together.
Click here to read all of Ella's articles on SocialHealthNetwork.com.