Testimony from Miss M: ‘I went to the heart failure workshop twice and really appreciated how much time Sandrine and the nutritionist put into it. Their explanations were easy to understand, and they took into account that Professor Damy and Doctor Lebras and Doctor Depuis (in the chemo department) had already explained to me how AL amyloidosis works (quite briefly). Being in the midst of this vicious circle of illness and everything that comes with it, it is very comforting to know that we are not alone. The meetings with other patients are so helpful because we get to share our experiences. Your workshop on AL amyloidosis is very informative but it might be a good idea to add how to deal with the secondary effects of the illness as they can be quite upsetting. Please send my best wishes to all the team.’
Testimony from Mr J: Here is what I have to say about the Amylo-PEP workshops in a nutshell: What I most wanted to take away from this was a better understanding of the illness which would allow me to have a better idea of what I am going through and then be able to explain it to my friends. Knowing which symptoms are down to the illness brings me some peace of mind in the midst of all this. The second important thing is understanding which medications we are supposed to take for what and what they do, why we don’t have all the same ones, etc. These workshops have helped me to live my life with a well-reasoned way of looking at things and live a better life as a result. I would just like to point out that having this team around you really shows you that you aren’t just one of thousands of other patients, your quality of life is really important to them.
Testimony from Mr J: Below are my thoughts on the workshops, written up as requested: Heart damage due to TTR Amyloidosis detected in September 2016, despite excellent medical monitoring. This illness isolated me physically and socially and affected my morale; the workshops helped me to get a better understanding of the illness and to cope with it. These two things have helped me to confront the obstacles which I face on a daily basis in my private life and in my relationships with loved ones. These meetings have helped me to find comfort and moral support.