Here is one from the archives. A song specially written for Rare Disease Day 2012 as part of aHUS community contribution to the day.
Entitled ” A Rare One ” and performed by Tricky Britches from Maine, USA – the song’s lyrics encapsulate what it is like coping with a rare disease,and , in some ways, how participarting in Rare Disease day helps with that.
The video, which can be watched by clicking here, features the aHUS alliance’s Linda Burke , who for many years now has been spreading awareness about rare diseases and aHUS.
#aHUSrockslives but be #aHUSstrong . If inspired there are a few days left still to appear in Jeff Smidtt’s video for Rare Diseases Day 2017 ( more about that here) but before you do…
sing along now…
You opened the door
And so I opened mine
You built a world in your heart
You’re standing tall – You’re reaching high
And I can’t turn around – I can’t walk away
This is what life has brought and it’s here to stay
And I just want you to know that you are not alone
But it’s a rare one, babe
We can find a way
It’s a rare one, babe
But we can shine today
It’s a mighty heavy load – Sometimes it’s hard to stay afloat, but
You can always count on me to help you through the stormy seas, and
When you feel like breaking down and giving up, just look around and
You will find many people who are just like me – They’re just like you
We can love and we can live
If you lead this journey I will light the way
We can share and we can give
Give ourselves a chance for a brighter day
‘Cause we can’t turn around – We can’t walk away
This is what life has brought and it’s here to stay
And I just want you to know that you are not alone
But it’s a rare one, babe
We can find a way
It’s a rare one, babe
But we can shine today
