Name: Esteban Luis Grieb
What would you like to discuss? Please share any updates since your last interview. I got my FA diagnosis in 1998. The first few years were extremely difficult for me to deal with this diagnosis and to live this new life.
After some years, I decided to become active in disabled sports and a few months later I won several competitions, and my highlights were the gold medal in the discus and javelin at the Austrian Championships in 2007.
Then I decided to pursue a new goal that would have been unthinkable for me a few years earlier. I wanted to record my life so far, describe my experiences, because at the time I thought a lot had happened or was happening, and give something to my fellow human beings. So I started to write a book, which I never thought I would ever do. This was around 2010.
What do you enjoy most about writing? The idea to unite people with Friedreich’s Ataxia and get in touch with them, mostly in my country. As the saying goes: a problem shared is a problem halved. I was and still am convinced that sharing experiences among those affected is the best way to deal with our fate.
I already knew such a large organization from the USA, FARA, from the Internet and had been in contact with them for a long time, or Ataxia UK in England, which I had already visited in person three times and which gave me a lot of strength.
My dream came true when I found a publisher and my book was published in 2017. As it was published in German, I was contacted by many colleagues from Germany and Switzerland, whom I then referred to their associations about Friedreich’s Ataxia in their country.
In the recent years, since 2018, I got to know a few people with FA in my country Austria, including Jakob Mitterhauser, who, like me, was and is very interested in bringing together colleagues with FA in our country. We then organized a few meetings together in our country and did some publicity work on the subject of FA and to raise awareness in our country.
In 2023, we founded the organization “Friedreich Ataxie Austria“. We hope to soon be known to the public. It is called a self-help group (Selbsthilfegruppe).
The goal is and will always be to bring people together, regardless of whether they are patients, family members, friends or doctors – simply everyone interested in FA in our beautiful country!
Interviewed by
Jakob Mitterhauser