It’s also a place where family and friends, who provide care and support people with muscle-wasting conditions, can talk to others either by using their real name or by posting anonymously.
Who manages the forum?
Sarah, aka Sar78, lives with Ullrich Congenital MD and is one of MDUK’s three forum moderators. The trio oversees all questions and answers that are posted on the site, making sure house rules are followed.
Sar78 said:
“The forum can be anything you want it to be: whether that’s chatting with others who have muscle-wasting conditions, sharing useful advice, or even venting frustrations – there’s something for everyone and we’re really keen to get more people in the muscular dystrophy community involved.”
Each of the forum moderators has experience with living with muscular dystrophy, meaning they can lend an understanding and empathetic ear, offer support where they can, encourage discussions and signpost where necessary.
What do people use the forum for?
Sar78 added:
There is a rich source of information within the TalkMD discussion topics, such as available equipment, people’s experiences of sourcing equipment and general problem-solving that might be useful to others. It’s often just lovely to be able to speak with others from all across the country that you wouldn’t otherwise have met.
The forum is a safe place for everyone, including those who have just received a diagnosis or people who have been living with their condition for some time. In addition, it can be helpful for professionals who want to learn more about muscular dystrophy.
It is extremely comforting to be able to chat with others who understand what people and families are going through, Sar78 said.
The forum also has the option for users to send private messages. This might be helpful for those who don’t want their comments shared on a specific thread, or for more sensitive discussion points.
Sar78 added:
Writing down your feelings can be a really useful way to get your head around things, and the forum gives people the perfect place to do just that. It’s entirely user-driven and we want to create a friendly atmosphere for all involved. People need contact, especially if they aren’t able to go out at the moment, and that’s what we’re here for.
Those wishing to sign up to the forum can register here. There are also tips and hint sections for new users, as well as dozens of threads that people may find useful to explore.
Sign up to TalkMD – there is much to gain by taking that first step! Sar78, Cat and embayweather will be there to welcome you.