0:00Enabled warriors, welcome to another edition of the special Coronavirus0:04episodes. We are here today0:06with Natalie Wilson and her episode will be coming out really really soon. So Natalie is a fundraising gal. Natalie works for EDS UK and wanted to have a bit of a chat about how the Coronavirus is affecting charities and in particular support groups. So hey, hey, Natalie, how you doing today?0:24Yeah, very well. Thank you. Awesome. So0:27let's have a quick chat about how you think COVID is affecting the sort of face to face meetups that you would normally have had with EDS patients.0:38Yeah, definitely. So I mean, part of a big part of a charity and what we do is support you know, everyone in the local communities with Ehlers danlos Syndrome, and we have a network across the K and of volunteers that run kind of physical support group meetings and As well as working on the fundraising manager for charity, but as well as working for the charity, I've also always volunteered to run my local support groups. I did this a long time before I started working for charity. And so I've always run physical support groups, and quite Luckily, about six months ago, and because of the nature of the condition, and the charity started running a few online and it was very much meant to be kind of a trial, you know, try get everything working, yeah, see if they work and that, you know, only started at the beginning of this year. And, and obviously, you know, since kind of all of the lockdown and kind of social isolation, isolation of them COVID all of the physical support groups have had to stop and and, you know, over These a lot of people in our community, sometimes the only time they come out for houses is to come to the support group meetings, you know, it's a big thing for them. And, and luckily, we've managed to move a lot of our support group meetings online. And I and it's funny funny, we're talking about this today because I ran my first local one last night. And the charity has been doing a lot of kind of more national things. So we've been having things like puzzle clubs and book clubs. Again, we've got a session every week that anyone can come and chat about their anxieties. But yeah, so coffee. So a lot of areas are having things like coffee mornings and things like that. And so I had I have my first proper meeting, you know, last night and it was good. We've talked a lot about kind of worries. And and it's very much you know, Normal support group meeting would be to talk about the problems with your conditions and you know where you can get help. And does anyone have any advice for me doing this, this and this but last night, it was very much that mixed with kind of COVID anxieties, and I think it hit God Of course, it's hit everyone really hard. It's hit, you know, lots of communities but for people with Ehlers danlos Syndrome, you know, a lot of people are seeing physios regularly and they're having help with massage regularly and you know, any anything that they're kind of doing is very much often supported by other people helping them in daily life. And, you know, cleaners and carers although care is obviously still still very much helping and, and our chat last night, kind of moved on to how can people start doing things themselves. You know, and a lot of people are having online meetings though zoom calls is kind of what we've been using to charity with their local physio, and to help them with new exercises or what exercises they should be doing now. And a lot of people last night in my meeting, we're talking about kind of like, self massage and how they're kind of relieving the aches and pains their muscles, so it was, yeah, it was quite a different meeting. And, but it's, it was good, and it was nice. And it and there was actually people in my meeting last night that have never been able to come to a physical meeting. Yeah, aren't travelled or they can't drive or it's even though I do the I do the Thames Valley area
