We were joined in our FSHD seminar by Professor Peter Zammit, Dr Enrico Bugiardini, Dr Linda Popplewell, Dr James Lilleker, Lindsay Murphy and Ben Porter to talk about research into FSHD. This covered the causes of FSHD, research developments, clinical trials, the FSHD patient registry and more.
We were then joined by: specialist physiotherapist Jo Reffin, physiotherapist Nick Emery, Raj Badiani who has FSHD and is the UK FSHD Coordinator, and Liz Williams who has FSHD and is a peer support volunteer for MDUK.
The panel discussed techniques to manage the condition and symptoms, such as exercise, as well as getting access to physiotherapy and hydrotherapy via the NHS and other local services.
You can watch the full recording of the FSHD seminar above or on our YouTube channel.
Additional information and resources that you might find helpful:
Throughout the year, there will be seminars in our MDUK Muscles Matter 2021 online seminar series, including condition-specific sessions, practical sessions such as financial support and psychological care to help you live well, and seminars looking into ways you can manage your condition such as cardiac management or diet and nutrition.
You can find out more about the seminar series, see the full list of seminars and book your place on Zoom on our Muscles Matter page.