Fighting the numbers game

February 26, 2019

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

  • Find out - find our leaflets here to share with your family and physicians - if you'd like a batch of ready-printed ones, please contact our office

  • 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.

 

 

 

Please reload

Featured Posts

The NHS proposals for rare disease care - what's next?

March 15, 2019

1/4
Please reload

Recent Posts

February 26, 2019

Please reload

Search By Tags
Please reload

Follow Us
  • Facebook Classic
  • Twitter Classic
  • Google Classic
Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

  • Facebook Social Icon

(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

Text reproduction and sharing

 

The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.