My name is Tzahi loya. I was born in Israel and I have lived there my whole life.
The disease GNEM has strucked me like thunder on a bright day. When I was 30, I got married and after a few months, my wife noticed that something was strange in the way that I walked. From this moment on, it kept getting worse. As an excellent basketball player since a very young age, never had I imagined that I was going to deal with the rare disease GNEM.
We started reaching out to several doctors in all areas as we wanted to try to understand what the disease was. No one could give us explanations, answers or solutions about this disease.
After 6 years, with Professor Argov, I received a diagnosis and was told that I was suffering from a disease that would only get worse over time and had no medicine that could help me in any way. The news hit me hard but despite that, I decided not to break down and continue with my usual life routine until I am no longer able to do the things I used to do and love.
I think that the most important thing is that my smile and optimism did not leave me even for one second over all the stages of deterioration of the disease. When I smile, I tell myself that it will be fine, and this gives me the strength to look forward to the future and still do some of the little things that I am still able to do.
Today, after 19 years since my diagnosis, I am happy that I can still walk with a stick that helps me not only to walk but to function as much as possible. I have lost the ability to work and haven’t been working for the last 6 years. I have 3 grown-up children who are healthy and without symptoms of any kind of disease, as well as my brother, sister, and my mother.
I spend most of my free time in my old/new hobby – cooking, and that takes most of my time at home. I like traveling and I travel a lot according to my limitations.
My message to all patients with this kind of disease is to not lose hope. I hope that we will recover, friends! People ask all the time how is it that I smile every morning and the answer is so simple; every morning when I get out of my bed and start to walk, I feel like I have climbed Mount Everest. How can one not smile if he reaches the Everest top???
May you always smile and look ahead. Because I believe this is an important part that helps
us keep our head up.