This is our ninth 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.

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Treasure the Exceptions. When it comes to sensory processing: We’re Rare and We Rock.*

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Recently I’ve heard that Patient Voice is the theme for Rare Diseases Day 2016. So I’d like to honour Findacure and RDUK who provide fora for our rare voices through their blogs and to thank them for empowering me to ‘write for rare’. Raising awareness about rare conditions in the mainstream is one of my goals and I’m working with the patient editor at the BMJ to this end. I was interested to note that she’s had several other approaches from people with rare conditions who are keen to get their message across. Which is, broadly speaking, ‘please, hear our voices’.

With organisations like these backing us up, do we need any others fighting our corner or devising more tool-kits? Well, yes, because we all – ‘rare’ or not – have a long way to go between having our voices heard and seeing the changes we need. Also, despite this post from Nesta, the process of engaging patient voices/groups is still in its infancy in many areas. Lately I found out – via other MdDS patient voices – that there are several relevant conferences coming up in the UK. But, to date, no patients have been invited. I discussed this with my mentor and she sent me this article, so I’ve sent it on to the conference organisers who say they will pass it up the line to the associations involved. They’re audiologists – let’s hope they are listening.

Meanwhile in the rare world there are, thankfully, many organisations addressing both health and social issues for us. This presentation certainly looks good, on paper (and anyone who’s been a ball in the game of specialism ping-pong is sure to enjoy the relevant graphic). The stand out message here, for me, was ‘protected employment’ and I hope that rare patients don’t lose their jobs in a future where this level of health and social care integration becomes a reality rather than what feels like a distant dream. I miss my career a lot and – although I saved for a rainy day – I miss the pay cheques too. I am fortunate because my family are able to support me, in lieu of state health benefits which have been denied to me now due to policy changes.

But not everyone is so lucky and lack of income is a problem for people with rare conditions on many levels. Some of us have to resort to crowdfunding for diagnostic tests and treatment. It’s a personal choice, but I wouldn’t feel happy doing this when there is still an urgent need to raise funds for research into rare conditions on behalf of the next generation.

Meanwhile, this article poses many interesting questions and makes me relieved that there is one relatively inexpensive treatment protocol for MdDS and it is not a medication. My former neuro-otologist will be learning about this protocol (opto-kinetic stimulation) soon. But, as yet, we don’t know if it will be available on the NHS. Some clinicians here and in the States are already using it but only for private patients and few of us can afford it since our personal tool-kits don’t always include oodles of money. As such my patient voice will echo those of others in the best piece of ‘advice for MdDS newbies’ I’ve ever heard: “Set a budget and stick to it”. And, meanwhile, let’s do all we can to access and inform the powers that be, so they don’t waste public resources – or ours – on inappropriate, expensive and potentially harmful treatments.

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This blog is dedicated to the memory of the women and men whose patient voices can no longer be heard. The suicide rate amongst people with migraine, tinnitus, MdDS, PTSD and many other invisible conditions is unacceptable to me. I am grateful to VEDA and the military for their efforts to break the taboos about this topic so that these lost lives still count.

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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.

Please feel free to share this blog. Disclaimer: All comments and opinions are those of the blogger, and may not reflect Findacure, or our affiliates.

Treasure The Exceptions pt.9 – Rare Toolkits / Advocacy part II

by Guest Contributer time to read: 3 min
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