Our call for testimonials about Amyloidosis around the world.
Your experience is gold, send us your testimonials.
Last year we organized a call for testimonials, asking people with amyloidosis, their families and carers to write to us on World Amyloidosis Day. Our aim was to collect as many stories as possible to share the experiences of all those who have had to deal with amyloidosis in some way.
The first call for testimonies was a great success
That’s the reason why we are doing it again this year. Indeed, the testimonies we collected were touching, sometimes upsetting, but above all they gave hope. Therefore, we want to hear the stories of new people who have been affected by amyloidosis.
Whether you are a victim of this disease, a relative, a survivor, a doctor, a carer, a nurse, whatever your status, do not hesitate to testify. Let’s talk about this disease, it will help future generations to cope with it. It will also help current generations by giving them hope and advancing science.
Amyloidosis is a silent disease.
We don’t see it coming, it keeps a low profile, its symptoms seem to be those of a simple everyday disease. This is one of the reasons why it is difficult to diagnose. Patients sometimes spend years looking for the reason for their ailments. They know something is wrong, they trust their instincts and they are right.
On average, amyloidosis takes four years to be diagnosed. Four of doubt and anguish. Four years of being passed from one specialist to another. Until finally finding someone in the medical field who knows about the disease and can diagnose it.
Patients sometimes go around their country, even to specialists abroad, to find the name of their disease. Their journey is full of obstacles, but their courage is spectacular. That is why their stories are so beautiful to read. They have an experience that must be told to the world.
In addition, their families and their own accompany them on their journey. They must bear with them an illness they don’t even have, the feeling of which they don’t know. However, they remain by their side to support them and give them strength daily.
We are therefore asking all these everyday heroes, from patients to doctors to relatives, to share their enriching experiences with us.
By freeing up the word, we are making progress in science.
Let’s fight together against amyloidosis.
➡️ To testify, go to this link: https://www.worldamyloidosisday.org/testimonials/ ⬅️