Wow!!! - We are overwhelmed by the positive response to our blog! All we can say is THANK YOU and please keep reading and sharing.
If you have any questions or comments or want to share anything at all, please do so. The aim of this blog is to raise awareness of Myotonic Dystrophy, support eachother, and keep up to date with Dregan!
This evening Pete and I will be embarking on a 5(ish) hour drive down to Basingstoke, to attend a 'Myotonic Dystrophy Information day and conference', which is being held by The Muscular Dystrophy Campaign. This is set to be an intense but informative day on Saturday! It will include a drop in session with a specialist nurse, and various talks from specialist and experts, including people from the Myotonic Dystrophy Support group! There will also be a couple of workshops, and I am particularly looking forward to attending the 'Cardiac Complications' talk, as Dregan is currently having monitoring on his heart (more info on this will come in later blog posts!) as well as many other tests.
I am interested to find out about any clinical trials also. As far as I am aware there are none at all happening at the moment. It will be interesting to see if there is any new information!
We were very lucky to be given the information on this day by the Neuromuscular Care Advisor who has been helping us for the last few weeks. She really is great, and I am glad I contacted her when I did. Conferences like this don't happen very often!!
I am under no illusion that this is going to be a difficult conference to attend, I imagine there will be a lot of other families with varying degrees of the disorder in attendance, and this is set to be a bit of an eye-opener. I have never met anybody else with DM, so it will really be a bringing us down to earth day. I think I will make some cards for this blog and see if anyone is interested in following/keeping in touch. Perfect opportunity, right?
We will be back on Sunday evening, so I will update the blog when we get back, and hopefully have some interesting information to share!
I hope my pregnancy hormones can hold out, haha!!! And that there is cake........ :-p
x
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