Session 2: The patient journey
This session commenced with a Q&A with two people with HAE. These were HAEi RPA Yong Hao Lim and Rachel Annals, HAEi’s Coordinator, Global Advocacy and ACARE.
Debs Corcoran, HAEi’s Director, Research, posed the questions. She asked the patient advocates about their personal experience of HAE. Both had a long wait before a diagnosis, and during this time, they felt great uncertainty about what was wrong with them. Before diagnosis, Yong Hao was worried his diet was causing the swellings. Rachel said that she isolated herself out of embarrassment.
Initial misdiagnoses included gout and arthritis. Yong Hao hit upon the idea of photographing his attacks to show his doctor. Eventually, this, combined with his own research, helped him get a diagnosis of HAE, which was a huge relief. Rachel echoed the relief that came with a diagnosis. She felt able to make sense of what was happening to her and could get on with her life.
Debs turned to how HAE impacts both of them today. Yong Hao said that it still impacts his life. He and his partner thought long and hard about having a child, and life in general requires a lot more planning; even dental treatment means a hospital admission to have preventive therapy. With effective HAE treatment, Rachel felt her condition didn’t hold her back. She agreed that a bit more planning is needed, but she’s traveled the world and is running a marathon shortly.
Finally, Yong Hao and Rachel said they wished healthcare professionals appreciated how variable and personal a condition like HAE is. They also suggested that HAE is more than just attacks; there is also a mental health burden.
Interactive patient journey
The assembled healthcare professionals were challenged to participate in an interactive discussion of a hypothetical patient with HAE. Both the audience and a panel of experts–Professor Connie Katelaris (Australia), Dr Ricardo Zweiner (Argentina), Dr Teresa Caballero (Spain), Dr Daria Fomina (Russia), and Dr Priya Bowry (Kenya)–were invited to submit their thoughts and opinions by Dr Thomas Buttgereit and Dr Kathrin Schön (both from Charité – Universitätsmedizin, Germany), as they progressed through the fictional life of a patient, from tongue piercings in her 20s to pregnancy, childbirth, and menopause.
Industry session: CSL
In the first of a series of industry-sponsored sessions, CSL described their commitment to the HAE community and their heritage in the area. The presenter, Dr Monica de Abadal, CSL’s Head of Medical Affairs, International, outlined three aspects which were central to the company’s work in HAE:
- Valuing the opportunity to support patients
- Shared interest in advancing patient care
- Leveraging strengths through partnerships
Overall, she promised that CSL will continue to innovate in HAE to better understand disease pathways and identify novel therapeutic targets that might ultimately improve the lives of people living with HAE.
