MDUK Muscles Matter 2020 – Wednesday 30 September round-up

Published Date
Catherine Rowland

Our MDUK Muscles Matter 2020 seminars continued on Wednesday 30 September, virtually bringing together people living with muscle-wasting conditions from across the UK with seminars on limb girdle muscular dystrophy (LGMD) and navigating the world of employment.

Marking LGMD Awareness Day (30 September), we were joined in our LGMD seminar by Professor Volker Straub and Dr Yalda Jamshidi to talk about the latest LGMD research. They discussed the various types of limb girdle muscular dystrophy, getting a precise diagnosis as well as the prevalence of clinical trials and how to get involved.

This was followed by a panel discussion on living with and managing your condition with Dr Fiona Norwood (Consultant), Jo Reffin (Physiotherapist) and Andrew Robertson (MDUK volunteer who as LGMD). The panel explored how people living with LGMD can manage their condition more effectively and talked about the importance of looking after mental and physical health, staying active as well as the impact Covid-19 has had on accessing support services.

Andrew Robertson who lives with LGMD shared his story on receiving a diagnosis aged 18, eventually having a family and how getting a mobility aid has helped him to stay active and independent. Andrew also talked a bit about his experience during the Covid-19 pandemic, the precautions he has been taking and how getting out daily has helped his mental health. You can watch the full recording of the LGMD seminar below or on our YouTube channel. 

The LGMD seminar was followed by our ‘Navigating the world of employment’ seminar. Our panel, including Priyaneet Kainth (MDUK volunteer and Agile Coach), Joy Adeleye (Access to Work, DWP), Stephen Robson (Senior Solicitor – Employment and Discrimination, Disability Law Service) and Andrea Russell (Neuromuscular Care Advisor) discussed key issues around accessing and staying in employment.

This brought up conversations around when to disclose your disability to an employer, the importance of having open and honest conversations with your employer and the need to raise further awareness about disability in the workplace. This led to a conversation surrounding the challenges people with hidden disabilities often experience in being able to get the right support and adjustments.

Joy Adeleye gave some information about the Department for Work and Pensions’ Access to Work scheme which serves to help individuals start and stay in employment. Priyaneet who had benefitted from the scheme commented on how it helped her to get to where she is now in her career, recommending others to also consider applying. You can watch the recording of our ‘Navigating the world of employment’ seminar below or on our YouTube channel

There are still four sessions to come in our MDUK Muscles Matter 2020 online seminar series, including condition-specific sessions to mark the awareness weeks and months during this period, and topical sessions on accessing services and accessing financial support. You can see the full list and book onto these Zoom seminars here.

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