I have newly been diagnosed with lgmd I am type 2b. I am struggling to come to terms with my new diagnosis my head is blown. Although I was along side someone when I got my diagnosis but they have a more it’s okay it could we worse sort of positive attitude towards it where I am having the more omg it’s took me ages to get here, giving up a few times to have found out and now I’ve found out the information has gone straight through my head and now I’m struggling kind of attitude.
How did everyone else come to terms with there conditions?
Hello and welcome. You are going through what the majority on here have gone through when we were diagnosed. It is nothing to be ashamed of as clearly it is a huge change in your life, and one over which you have not control to stop it happening. I suppose I should have said that you do have some control over it, especially if you are actively fighting it, physiotherapy and exercises are the first that come to mind, not to mention lots of research into your condition to find out more about it from sensible sources like MDUK.
But how did we come to terms with it. For myself I had just found out my son was diagnosed with the condition (FHSD) and I was to be a carrier. A few years later I was not longer a carrier but a sufferer. I had done lots of research, and being from and NHS clinical background I was able to find out more about what my son and I had and how it might affect us. So my acceptance did not come quickly, but with lots of time, and acceptance, but a willingness to fight it all the way. Even today some thirty years on I have times when I ask why me, what have I done to deserve it. All the questions I am sure you have asked yourself. Thing is I do not know, it is a combination of genetics, the things that shape who we are. There is much research going on that will help us all in due course, and there are lots of things that can be done to ameliorate your symptoms in between times. Your specialist will be able to tell you more. Others may offer their own thoughts, but I would just say, dont give up. Fight the fight. Remember too that we are always here.
Hello, like Mike said there’s more research being done and also keep fighting. Yes it is a big shock it’s a bit like going through the grief process but you will get there and take each day as it comes. You can also ask to speak to a genetic councilor. If you have any hobbies it helps you from over think it’s a bit of a distraction and do talk about it to your friends and family about it and we don’t all deal with things the same way. Cc