I started mdds international as a google group a couple of years ago on the suggestion of one of my clinical contacts. The idea was to bring together a small number of patients with MdDS with members of the UK Balance Interest Group (BIG) to share information and research. However the BIG crew decided they weren’t really interested in the ‘patients involved’ movement so the google group is no longer active. But since I just found out that the American MdDS Foundation are following this blog, I thought I’d better write one.
Hello, Foundation peeps – I hope all your seas are calm. Congratulations on setting up the patient registry, that’s excellent. I rarely look at your site so didn’t know the registry was set up. Now I do I can promote it within the groups. I notice your survey still only has the facility to record 8 episodes and wonder if you’d be able to change this, please? There is a patient information leaflet floating around in the UK which states that people don’t usually have more than 8 episodes and this intel comes from your survey. The upshot is that people here are having their diagnoses over-ruled or denied if they are, say, in their 10th episode. Ridiculous, I know, but it’s a problem. I also notice that your literature list is missing several recent papers including the Saha and Fife paper and the Ombergen systemic review paper.
I am happy to report that the UK MdDS Facebook group is going from strength to strength. The woman who founded it got flack from members of the ‘friends’ group which she didn’t need and found very upsetting. It’s so silly. We’re dealing with a very different health system here and need a local group so that we can find our way through it successfully, especially when it comes to trying to persuade the powers that be to provide viable treatment options. Why would anyone have a problem with that? Subsequently she and I have formed Action for MdDS UK with the strap line ‘Technology, Training, Treatment’. Our website is developing gradually and we are very grateful to Dr Dai and Dr Hain for all their support. There is a summary of our 2015 activities on the site.
Last year was a very busy one for me as Findacure provided me with a mentor. Amongst other things, she encouraged me to blog and I was guest blogger for Findacure for 11 months. RDUK have also been very supportive and published one of my blogs (over 2000 views). MdDS was mentioned twice in their survey report and I have an article that mentions it coming out in the British Medical Journal later this year. But the highlight of 2015 was meeting two fabulous ‘rock docs’ in Sheffield who want to change the way MdDS patient are treated here – in all senses of the word. I then paid for one of them to have training with Dr Dai in New York and he is in the process of setting up his clinic to deliver that protocol. The other is very busy but, when he can, he’s going to write a Pathway for us and see if he can get MdDS included in the UK Genome Project. My local genetics professor has also been very helpful.
Meanwhile I will be working with various clinical commissioning groups to see if we can get Dr Cha’s protocol established here too. This is a lengthy and complex process and I’ve only just found out how to do it. Again, everyone involved is being supportive and encouraging which helps a lot.
I doubt I will write more blogs here but just wanted to say Hello and to thank you for setting up the patient registry.
All best wishes,