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Happy Rare Diseases Day!

Updated: Mar 1



The rare disease “world”, if you can call it that, is a place that until you become a part of it you never really understand. You may not even know it exists. You certainly never think you will end up there, with it becoming your new normal.


Having grown up around disabilities, as a child I never thought anything of it even though it was a much less tolerant time than we are blessed with now. I learned that despite having a disability, people can live full and rewarding lives.


In some sense that experience growing up has helped me hugely when I was thrown into the rare disease world head-first a few years ago. A place that I like everyone else there never expected to enter.


To cut a very long story short at the age of 2 my son was diagnosed with Transverse Myelitis. It’s a really rare neurological condition where the myelin coating of the spinal cord becomes inflamed / damaged meaning messages can’t flow through to and from the brain to other parts of the body (think of it as the insulation on an electrical cable becoming damaged and no longer working).


It is often triggered by a virus. In my son's case he had a cold which caused his immune system to attack his spinal cord. Transverse Myelitis can impact people in a huge variety of ways, around a third make a full recovery, a third make no recovery and a third are somewhere in the middle, like my son.


"What does all this have to do with my business?" I hear you say


Well here is the thing, life throws things at you. Sometimes it is just like a little bump in the road and you can easily step over them. Other times they are more like a monumental, earth-shattering meteor shower. When the latter occurs you have a choice, you can adapt, evolve, change, move around or simply roll over and die out.


Thinking of that very famous meteor shower which people believe to be responsible for the extinction of the dinosaurs, you can be a T-Rex, you can stomp around jumping on things and doing as you please. Making your mark on everyone around you regardless of the consequences.


You could be a Diplodocus, huge and towering. The biggest in the land. You don't disturb or worry too many others, but everyone knows you’re there, looming over them. Some catch a ride with you, hopping on your back, but some avoid you altogether for fear of being trampled.


The problem with being the T-Rex or the Diplodocus is that despite being huge and imposing, deadly and powerful they couldn’t adapt or survive in the face of the meteor shower. They are extinct, despite at one time being a force to be reckoned with.


The Pterodactyl, however, had a different plan, they moved around, finding food adapting and evolving into what we we now know as birds. Or so the story goes - I am after all no scientist, simply well read on the subject thanks to a certain fanatical small boy!

Bringing it back to the world of rare diseases, you have to adapt. You have to evolve. You have to recreate a new world even though it’s not something you had ever thought possible.


It’s the same with your business. There are lots of things which will come up over the next weeks, years and months all of which will affect how we run our businesses.


At the moment we live in a time of uncertainty, with Brexit, environmental issues, climate change and so much more creating modern-day “meteor showers” and rocking the way we do things we all need to adapt from time to time.


Reassess if what you are doing is the best thing for your business. As times change we must change and adapt with them. As the saying goes if you always do what you have always done, you will always get what you have always had.


If you are considering starting a business but don’t think now is the right time. Think again about your decision. There may never be a “right” time sometimes we have to take the plunge into the unknown world, the world we never imagined we would and the world we now have become a part of.


So here is to the new beginnings, dodging your meteor shower, flood or whatever comes your way, and most importantly getting up tomorrow and going for it all again.


For more information regarding Transverse Myelitis visit www.myelitis.org.uk

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