In May, Professor Yuansheng Xie, a famous nephrologist from the 301 Hospital (top General hospital in China), was invited to give a lecture to the community on the topic ”Dialysis & Kidney Transplant”. Renal involvement is the most common symptom, especially for classical Fabry patients. Lots of patients have concerns about this symptom and it is often misunderstood. During the lecture, Professor Xie shared the most pressing issues for dialysis and transplant patients, and then during a live Q&A he answered questions from those who attended the lecture online. Questions like; “When should I start dialysis/kidney transplant? Haemodialysis or peritoneal dialysis ,which one is more suitable for me? Shall I start the ERT during the dialysis? Will this impact the effectiveness of the ERT?” were answered. He also shared guidance on nutrition for patients. The lecture was recorded and shared with the Chinese Fabry community, allowing them to listen to it again when they want to.
Besides these topics, mental wellbeing issues were also covered. Two webinars were organised, one in April and one in June. One focused on “How to cope with Fabry ”, and the other one focused on ”Fabry & Children”. A psychologist spoke about the many complicated feelings that come with having Fabry Disease and several patients shared their own stories, which struck an emotional chord with the audience. More than 150+ Fabry patients attended these online meetings.