This is our sixth instalment from our guest blogger, who writes about various aspects of living with rare conditions. All posts under the title ‘Treasure the Exceptions’ are written by our guest blogger, pro bono. The information is supplied by members of various patient groups, clinicians etc. Whenever possible, permission is sought for direct quotations and anonymity is respected when requested.
Treasure the Exceptions. When it comes to sensory processing: We’re Rare and We Rock.*
JAM stands for June Awareness Month for Mal de Debarquement Syndrome so I hope I can be forgiven for focussing on MdDS in this blog. I hope the progress made by the MdDS community since the last JAM will inspire others to keep raising awareness about the rare conditions they have to co-exist with – and about rare conditions generally.
However, for our merry crew to build on our successes, there’s a glitch that needs addressing. In the UK in particular, people with MdDS are still being given various differential diagnoses, including Space and Motion Discomfort Syndrome and Visual Vertigo, sometimes even after a formal diagnosis of MdDS following a classic motion trigger. This doesn’t help with respect to ascertaining the prevalence of MdDS and these diagnoses also seem to ignore the trigger mechanisms, which are crucial to the research into this condition. Sure, a lot of us have been known to say “We don’t care what it’s called, we just want the rock to stop.” But, with the best will in the world, we can’t rebrand MdDS each time clinicians unilaterally come up with yet another term for it. So, first up, dear clinicians, please make that stop – or you’re putting us back to square one, with respect to awareness raising. Ta.
On to the successes …
Once we knew about it we got the disease dossier on the RE(ACT) Community unlocked very quickly. Tricky, for people who find computer work challenging, but we did it. Several campaign organisations, including the Rare Diseases United Foundation, are now aware of JAM for MdDS and the Australian crew have been sharing their stories via Rare Voices Australia. So MdDS is now well represented within the Rare Conditions world both in and outside America. Meanwhile Diane Morley and others have been working hard to get MdDS a good amount of press coverage. Diane’s interview with the Daily Mailwas picked up by several other papers and radio stations, both in the UK and internationally. Then Yahoo Travel featured this article which discusses one of the treatment protocols being developed in the USA. Which leads me on to the huge progress being made by the awesome researchers there. Earlier this year Dr Hain emailed me to say that a member of his team visited the Mt Sinai clinic in January and that one of our pioneer researchers, Dr Cha, was also there. So there’s hope that a multi-modal treatment may be on the horizon, along with a shared understanding of the trigger mechanisms. Dr Hain’s team are now going to see if they can duplicate the Mt Sinai treatment, which is excellent news. Further information about Dr Hain’s ongoing research can be found on his website.
In Australia (entirely unfunded) Dr Pearce is developing a trans-cranial stimulation protocol following on from his work on concussion treatments and also from Dr Cha’s research into MdDS. As well as this, Dr Pearce has also generated some mainstream media coverage for his work.
In the UK a patient initiative has resulted in the creation of a ‘top up, use at home’ version of Dr Dai’s protocol, which should be a boon for anyone who benefits from this treatment. Also a paper about stigma and MdDS has been published here in the UK, thanks to the Chronic Illness Research Team at UEL.
While we wait for treatment to be available for all of us some of us have devised a game called ‘MdDS Doctor Bingo’, to run alongside the game of ‘specialism ping-pong’ that will be familiar to anyone with a rare condition. Dr Bingo is a bit twisted but one of the Australian researchers recently reported that patients with MdDS are often treated badly by doctors and sometimes laughing about it is the only way forwards. So points get awarded any time a doctor says any of the following: “I’ve never heard of it”, “Your tests are all normal, there’s nothing wrong with you”, “There’s no treatment, you’ll just have to learn to live with it”, “But you look OK”, “You can’t have MdDS because no-one has it for that long” and/or (my personal favourite) “Well I love the feeling of being on a boat. And, hey, since you feel better when you’re back in motion, why don’t you go and live on one?” (Extra points if the doctor has a picture of their boat up next to their qualifications.)
Roll on when we’re all scoring zero in this game. 8 years on from diagnosis I’m getting close and am no longer treated badly by doctors. Due to exceptional good fortune I now have an excellent GP and neurologist. Just as soon as appropriate treatment is available here in the UK (now would be good), I’ll be shouting “House” in the only acceptable version of MdDS Bingo.
If you have an experience of a rare condition that you’d be willing to share (or any comments about the ‘treasure the exceptions’ blogs) please contact [email protected] I am particularly keen to hear from any clinicians who have patients with rare conditions and from those involved in research.
*This is the logo for a new group (founded by our blogger) which was established to campaign for people with MdDS in the UK.
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