I knew it was a reasonably rare condition in that I was unlikely to meet anyone else with it in my everyday life. What started with an Internet search to find others quickly led me to MDUK.
In 2012, Liz was there when MDUK engaged with the FSHD online community to create one of our first FSHD information days.
I remember over 100 people with the condition attended at that time. This was a huge success and there have been many information days since.
From this, I became more and more involved with MDUK and when the peer support programme started, I jumped at the chance to volunteer.
Whether it was planning for the future, moving home and house adaptions, eventually using a wheelchair or even planning a holiday and where to go for those facing mobility challenges, I have gained knowledge from everyone I met through being a peer support volunteer.
The work varies so much, from helping people do their own research, suggesting holidays, and even at one point sharing information to help people have a family through a questionnaire shared from NICE. If that’s not life-changing, I don’t know what is.
Liz is also a member of MDUK’s Milton Keynes Muscle Group, which brings together local people with a range of muscle-wasting conditions.
She commented:
It is such a positive group of people and we share our muscular dystrophy journey, as well as finding out about local services and how to access them. Without these amazing people, I would have taken a lot longer to make the transition from walking to wheelchair use full-time.
Being involved helps MDUK evolve to best support those living with muscle-wasting conditions.
Because I have learned so much over the last 15 years, I feel it is only right to pass on what I know. There isn’t a text book for navigating FSHD, or any form of muscular dystrophy,for that matter.
We look forward to continuing working with volunteers with professional experience to help us unite skills, knowledge and resources in the UK, so we can improve the quality of life for the people living with a muscle-wasting condition and to bring treatments closer to reality.
For more information on how individuals and businesses can get involved with volunteering at MDUK, please visit: https://www.musculardystrophyuk.org/get-involved/volunteer-with-us/