To mark LGMD awareness day, we were joined in our LGMD seminar by researchers Volker Straub and Yalda Jamshidi to talk about the types of LGMD, clinical trials, gene therapy as well as the findings from a current study of 15 families with the condition.
This was followed by a discussion on living well with LGMD with physiotherapists Anna Mayhew and Jennie Sheehan as well as Louise Halling who is a parent and counsellor who lives with the condition. The panel discussed the importance of NHS multidisciplinary teams to ensure that the right support can be accessed at the right time such as community services like hydrotherapy and physiotherapy.
Louise spoke about the reality of living with the condition and that the lack of public awareness and understanding can sometimes be isolating. She spoke about her journey with LGMD as a journey of 'loss' and 'grief'; highlighting that the support from the multidisciplinary teams and MDUK, as well as talking to others on a similar journey was reassuring and helpful.
You can watch the full recording of the LGMD seminar above or on our YouTube channel.
There will be seminars throughout the year 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 see the full list and book onto these Zoom seminars here.