Bestuurslid Koenraad Verhagen was gevraagd om op de internationale bijeenkomst in Parijs in november 2017 te vertellen over hoe het is om te leven met de ziekte amyloïdose. Hij verwoordde zijn gevoelens in een lied, dat hij zong op de bijeenkomst. U kunt het hier zien.
The song of the patient: I love my body
I have only this body
It needs cure and care
Because without my body
I wouldn’t be there.
My body is my house
but I was not aware
that a guest, uninvited
Was sleeping there.
His name is Amylo
He woke up and said
My message is too bad
But I have to tell it even so
I am small but will grow
Cannot stay in one room
I wanna visit them all
I am your prophet of doom
I said listen Amylo
I do not want you to stay
This is MY house, MY body
Get out of me, go away-ay
But then I saw better
Amylo belongs to me
What is part of my body
Cannot be my enemy
I became aware
Amylo will not go away
Has comfortably settled
Deep in my body, in my DNA
Some people were watching
Watching my fight
My house getting darker,
They brought me some light
In spite of the struggle
The struggle and strife
Amylo helped me discover
Love as the essence of life
I carry a disease
But to be able to cope
New treatments, doctors, nurses
You make me a carrier of hope !
Hope for my body
Hope for my mind
You give me the drive
To go for quality of life
But no treatment can prevent
That human life comes to an end
Then, I will say my body goodbye
But that is no reason to cry
When my spirit will leave my body
Where then will it go?
I am sure for a destiny
Where there will be no …… Amylo.