Rare Disease Day- Guest post by Sally Mitcham

Rare diseases aren’t that rare. Really? Sounds a bit contradictory, doesn’t it?

Rare means that it’s very unlikely that we’ll ever have to worry about it, right?

Well, only partly right.

There are over 6000 rare diseases, and 1 in 17 people will be affected by a rare disease at some point in their life.

I studied clinical medicine in my chiropractic degree. We touched on some rare conditions but, like many medical students, were told ‘When you hear hooves, think of horses, not zebras’. In other words, symptoms are far more likely to be due to a common condition.

When my youngest son had problems with his speech and other areas I assumed that it was probably just development delay and that he would eventually catch up with his peers.

I never once considered that I would soon hear the words ‘progressive’ and ‘life-limiting’.

It’s been a difficult few months but we’re getting through, and I’ve discovered whole communities of wonderful people who are also living with rare.

My own little boy brings something special to many people around him.

And with more awareness and funding, advances are being made in finding treatments and cures for conditions like his.

I’ve come to realise that sometimes life takes you down a different path, to countries and continents you’d never dreamed of.

In Africa, when you hear hooves, it may just be a zebra.

The zebra may give you a bumpy ride but, oh my, they are beautiful creatures and can make the heart soar.

Kindly written especially for Rare Disease Day 2016- by Sally who writes all about her wonderful family over on A Hunter’s Life-Learning to Live with MPSII which can be found  Here

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