My EAN Experience
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First of all, I would like to thank the Glut1 Deficiency Foundation for kindly inviting me to be part of this amazing experience and for giving me the opportunity to be an advocate for Glut1 DS.
Throughout the experience, I felt different kinds of emotions: most of the time overwhelmed - from happiness and pure joy, just for being there and having the chance to give a voice to all the Glut1 patients worldwide; to some sort of disappointment every time a physician came in to the booth and showed lack of interest in our cause but surprisingly very interested in the goodies we had to offer (luckily only a few ones) or even felt sad when a representative from the African Academy of Neurology told me that there might be, most probably, cases in Africa, but unfortunately they don’t have adequate means to diagnose the disease.
I felt very fortunate for being able to talk to physicians from different countries and continents and explain to them, from a patient perspective, what it is like to have and live with Glut1 DS, since there isn’t much information available about it.
Sharing with them my personal experience seemed to be very interesting for them, since it enabled them to compare it with their own patient experiences (e.g. Glut1 DS patient symptoms may change in the course of time, it always depends on every single case, since it is a rare disease and we don’t have all the same symptoms) for better understanding of what could be common or not so common symptoms.
I only wish I could be a more active member for the Foundation but unfortunately we are an ocean apart which does not allow me to participate as much as I want to.
I know that great news will come for all of us in the near future.
Hope is the force that moves me forward.
Teresa Lamas
25 years old
Portugal
Throughout the experience, I felt different kinds of emotions: most of the time overwhelmed - from happiness and pure joy, just for being there and having the chance to give a voice to all the Glut1 patients worldwide; to some sort of disappointment every time a physician came in to the booth and showed lack of interest in our cause but surprisingly very interested in the goodies we had to offer (luckily only a few ones) or even felt sad when a representative from the African Academy of Neurology told me that there might be, most probably, cases in Africa, but unfortunately they don’t have adequate means to diagnose the disease.
I felt very fortunate for being able to talk to physicians from different countries and continents and explain to them, from a patient perspective, what it is like to have and live with Glut1 DS, since there isn’t much information available about it.
Sharing with them my personal experience seemed to be very interesting for them, since it enabled them to compare it with their own patient experiences (e.g. Glut1 DS patient symptoms may change in the course of time, it always depends on every single case, since it is a rare disease and we don’t have all the same symptoms) for better understanding of what could be common or not so common symptoms.
I only wish I could be a more active member for the Foundation but unfortunately we are an ocean apart which does not allow me to participate as much as I want to.
I know that great news will come for all of us in the near future.
Hope is the force that moves me forward.
Teresa Lamas
25 years old
Portugal
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