Fighting the numbers game
What rare doesn't mean
The last day of February is usually the 28th but every four years, it's the 29th - this is a rare day.
No wonder then, that it was the date chosen to celebrate Rare Disease Day every year (and yes, when it's not a Leap Year, it falls on the 28th).
But why would anyone care?
Simple, have a look at what rare doesn't mean:
One in twenty people will suffer from a rare condition at some point in their lives, that's 0.5 % - a bit more common than you thought?
You're one of three people your physician has ever seen in their decades-long career with the condition - but they're happy that you're first person they've been able to offer a proper treatment to (that's 30.33%) - mmm not terribly rare anymore
Your spouse has one partner, who've they've cherished and lived alongside for decades, that's 50% of a partnership - goodness that's not rare at all
You've survived surgery and disability, only to end up with something your doctor hasn't heard of before, so that's 100% of you as a unique human being - not rare in the slightest
One needle in a haystack is difficult to find. Fill the haystack with needles of all colours and sizes, however, and they become way more difficult to ignore.
So many voices together break the numbers game, which is the challenge faced by those with a rare disease.
Greater awareness brings more diagnosis as doctors and patients know the symptoms to look for, know the tests to perform, know where to go for more information and advice
More diagnosis leads to greater clinical interest, funding and better outcomes for patients.
This then feeds back into better awareness and so the cycle continues.
The progress we've already made
In just a few years in the UK, we've seen more doctors take an interest. Through sharing information and ideas, our members have supported each other through diagnosis and often into treatment. What was an exceptionally rare condition is slightly less so - just because we've talked to each other.
In the USA, husband and wife team, Rori and Gary Daniels have taken the fight to Capitol Hill in honour of Rare Diseases Day to lobby for research funding. As a community, we've come a long way.
What is rare? The commitment and fight so many of our members show on a daily basis - an uncommon strength to keep speaking up and championing research into Superficial Siderosis.
What can you do?
Join in - log on and join our Facebook group, organise fund-raisers, donate towards research here
Link up - support fellow patients and families on-line or get together face-to-face. You'll find we're not so distant from each other as you first thought.