February 21, 2019 at 4:15 pm #175699Hello
Hi I’m Hannah I’m 24, I have congenital muscular dystrophy, I’m interested in getting to know some young people with MD. I was wondering anyone want to get to know each other. I know about trailblazers but some personal connections might be niceFebruary 21, 2019 at 4:54 pm #175703Reply To: Hello
I have a type of CMD although I’m not sure I’d class myself as young anymore lol I’ve just turned 41. I live in East Sussex.
We have some members with CMD who may introduce themselves here. Also, if you are not already aware, there is a Facebook group linked to Cure CMD which is based in America but has members from all over the world, (quite a few from
UK) so it might be worth joining Cure CMD Support Group
Muscle groups are another way you can make personal connections within the MD community. Have you ever been to your regional meeting?
Great to have you on board. Keep in touch
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015March 1, 2019 at 9:02 pm #175846Reply To: Hello
I’m not as young as you at 36 but i also would like to get to know fellow peers with MD. I have FSHD and diagnosed 3 years ago, although that was a formality as there is family history, i already had a strong indication as to what was going on.
I work full time and have recently graduated with a degree and Post Graduate Certificate. The condition is affecting my walking and stability which has begun to limit my mobility, to get around this i have now got a mobility scooter which i use for sight-seeing holidays or long day trips.
Please don’t hesitate to ask any questions.
StarbriteMarch 1, 2019 at 9:34 pm #175849Reply To: Hello
I’m a Post Grad in Environmental Management and a Graduate in Environmental Science. Although i used to work with children up until 5 years ago, I now work for a water and sewerage company investigating pollution incidents.
I have a Luggie mobility scooter if that helps, its small and only weighs the same as a full suitcase.
Tell me about yourself, do you work?
StarbriteMarch 2, 2019 at 12:45 pm #175859Reply To: Hello
Oh awesome. At the moment I’m doing a placement as part of the MD moving up project but I also work for another disabled charity and a shop. It’s all voluntary. I’d love to find paid work I also studied film and photography at university
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