Opening the door, seven million folk, and Rare Disease Day...

It’s one thing to have a rare disease (or condition, as I prefer to call it).

It’s another thing entirely to tell folk you have it.

Telling involves opening the door.

Telling involves admitting there’s something wrong somewhere under your skin (or over it)…and sometimes it will stay wrong for the rest of your life.

Telling involves being one of the 4% of the population of the world who has one of the 7,000-odd known rare diseases.

And those are only the ones we know about.

Those are only the ones we can put a name to.

But telling is a risky business.

Telling involves admitting to yourself (and everyone else) that it mustn’t be all that bloody rare if there are about 7 million folk who have one of them.

Telling involves realising that you’re not that bloody special after all.

But that’s only one way of looking at it.

Another way involves a number that’s a whole lot closer to home.

Like the number of people in the UK who have a rare condition (or disease, as I like to avoid mentioning).

That number is around 3.5 million.

Sounds a lot.

Almost too much to be worth bothering about.

Almost way too much to deserve a special day all of its own, dedicated to all those people who suffer from rare conditions…and all those who fight like hell every day to help them.

You think?

Okay…think on this…

Last month, February 28th, was Rare Disease Day.

With all the other terrible things happening around the world, RDD probably passed you by unnoticed. But around 5 to 8 people out of every 100,000 living here in Britain noticed it.

They suffer from a rare condition called CIDP. It stands for Chronic Inflammatory Demyelinating Polyneuropathy.

Helluva mouthful.

It’s a rare autoimmune disease (oops, condition) of the peripheral nervous system.

It affects feet, legs, hands, arms…and life.

There’s no cure (yet). But there is management. There is treatment.

A lot of the time the condition is invisible.

You can’t tell just by looking at someone whether they have it or not.

Not until they try to walk. Or balance. Or talk about the numbness in their feet. Or describe the tingle in their legs or hands. Or take their painkillers. Or the medication they inject into their body. Or reach for their walking stick.

Then you can tell.

Big time.

So…the next time somebody tells you they have a rare disease…pause for thought.

Don’t back away.

Don’t change the subject.

Don’t freak out.

And don’t…please don’t…try to be sympathetic.

Just try to be genuinely interested.

Try to leave the conversation a bit more knowledgeable than when you came to it.

Try to open your eyes a bit more than you did when you woke up this morning.

Then try your damndest to keep them open…

*****************************************************

The above is an extract from my as yet unpublished (and mostly unwritten) book Ad Interruptus.

Like its sisters Ad Lib, and Ad Infinitum (NOW AVAILABLE), it's about creativity, advertising, life, and lots of stuff in between.

You'll find Ad Infinitum, Ad Lib, and Ad Hoc on Amazon, along with my other books, Love & Coffee and Heaven Help Us. In print and ebook. Waiting for you.

And the wonderful thing about all three Ad books is… it doesn’t matter where you finish any chapter or episode.

Because it will always be pretty damned close to where you started it…

Ad Infinitum: https://amzn.to/3pof7Uq

Ad Lib: https://amzn.to/2kd4LKf.

Ad Hoc: https://amzn.to/2Nx8GL8

Love & Coffee: https://amzn.to/28IWaHq

Heaven Help Us: https://amzn.to/2nkQ1Jk

Grab a coffee, grab a chair, and grab a sneaky peek.

Then grab a copy...