This is our second Valentine’s Day themed instalment from our guest blogger, who writes about different aspects to living with rare conditions. All posts under the title ‘Treasure the Exceptions’ are written by our guest blogger, with information kindly supplied by members of various patient groups, clinicians etc. Whenever possible, permission is sought for direct quotations and anonymity is respected for all.
Treasure the Exceptions. When it comes to sensory processing: We’re Rare and We Rock.*
Given the timing of this blog I’m approaching the subject of living with a rare medical condition (MdDS) with as much love as I can muster. Like most other orphan conditions MdDS is considered incurable. It is life-limiting, invisible and largely misunderstood by the medical profession. No-one would wish MdDS on anyone. But, in the MdDS community, I am considered ‘lucky’ because my sister had similar symptoms for two years, so understands how debilitating they are. The love and support I receive from family and friends is beyond measure. It reduces me to tears regularly.
This is neatly balanced by the amazing level of humour present on our social media sites. However it is triggered, MdDS results in the sensation of being in constant motion. This is often described as ‘being on a ship, in a storm, all the time’.
So even those of us who were not triggered by sea travel hone our nautical puns since we are, effectively, all in the same boat. Another description of this sensation is ‘rocking’. As such a greeting of ‘Morning Rockstars’ can brighten even the worst days. The women and men on these sites offer constant love and encouragement to one another – and we share useful data.
From this we know that some of us have relatives with a range of neurological conditions including MS, Alzheimer’s, epilepsy, MdDS – and migraine. Sure, ‘correlation is not causation’ but I love the UK Genome Project.
The MdDS/migraine link is a strong one. No, I can’t love migraines. But I have great respect for the team behind this campaign. Their film will empower people living with migraine and those who research it. One of my contacts with MdDS told me that her Hearing Therapist said “MdDS? Vestibular migraine? When we find the answer to one, I think we’ll find the answer to the other.” We loved that, big time, believing that the key to many common medical conditions could be found through researching rare ones.
Knowing this, I can’t love how hard it is for researchers into rare conditions to get funding. So kudos and love to the RE(ACT) Community for providing an excellent platform for funding such research. Also I love being able to donate to Findacure via Give as you Live.
Not that I do much on-line shopping. This is partly because people with rare conditions involving the muscular-skeletal system and/or ataxia (of which there are many) can lose their livelihoods, when deemed to be uninsurable fall risks. If this happens at a time when life can get a bit costly, it’s a double whammy. My gratitude goes to Shire for highlighting this and other issues. I love their strapline.
Rare Diseases day is coming up. Not something I ever thought I’d celebrate. But life can change irrevocably, just from disembarking from an aeroplane. Huge thanks to all involved with organising related events, such as Genetic Matters at Voice North. These all help us orphans feel less isolated. And that’s lovely.
*This is the logo for a new group (founded by our blogger) which was established to campaign for people with MdDS in the UK.
Disclaimer: This post is the intellectual property of our guest blogger and cannot be reproduced without permission from the author. All comments and opinions are those of the blogger, and may not reflect Findacure, or our affiliates.