While sorting out some papers recently I came across a poem an aHUS patient sent me about living with dialysis. This reminded me of other poems about aHUS and it being a rare disease.
Both are copied below
But first is the aHUS poem in the form of Carol which captures the fight of having aHUS. And the inspirational hope that underlines all three poems.
” ALL’S ALRIGHT”
Snow is falling, bells are rung
The air is filled with carols sung
But for some, this time of year
Is filled with dread but have no fear
aHUS is a rare disease
Harms the kidneys, until they cease
Don’t give up, keep up the fight
And carry on ’til all’s alright
The holiday’s a time of cheer
For some with aHUS, it’s hard to hear
The laughter and joy abound
In bleak mid winter’s frozen ground
aHUS is a rare disease
Harms the kidneys until they cease
Don’t give up, follow the light
And carry on ’til all’s alright
Falling snowflakes whisper a prayer
For families united in a harmony of care
in winter’s chill , warmth in their song
Tells that hope and love is strong.
Raise awareness, spread the word
So round the world, their voice is heard
Never give up, nor back down
Keep right on ’til health is found
aHUS is a rare disease
Harms the kidneys until they cease
This time of year, don’t lose sight
Of happier times when all’s alright“
A second of the poems for those aHUS patients still requiring dialysis therapy
MY PRISON HOME
The dialysis machine, my constant companion
A bond that can never be broken
It cleans my blood, day and night
Giving me a chance to continue my fight
I lay here, hooked up to this machine
My life now a never-ending routine
But I hold on to hope and to faith
That one day I’ll be free of this weight
The nurses come and go with a smile
Helping me through this trial
I am grateful for their care and their grace
In this difficult, uncertain place
So I’ll lay here and do my time
Until the day I am given a sign
That I am well and able to roam
Free of this machine, my prison home
And another of the poems being about aHUS being a rare disease
A RARE ONe
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
(c) “A Rare One” by Tricky Britches more from them on their website click here
if anyone know of any other aHUS poems let us know.
Article No 645
