I’m Ariadna’s mother, she is 28 years old now. Ariadna has had refractory epilepsy since she was born, we have gone through different stages in these years, different medications, studies, hospitalizations. Currently, Ariadna has a seizure every 1 or 2 months, you never know, since she has no previous aura, so she has hit herself on some occasions.
We are a family, we are constantly monitoring her, which on one hand, you could say that she is very well taken care of, but on the other hand, she’s also very limited. She’s had all kinds of tests made on her. Her diagnosis: idiopathic refractory epilepsy, generalized with tonic-clonic seizures, without a prior aura.
To have a device that could warn her a few minutes earlier would be the salvation of her life, since she would be able to do many more activities, knowing that she has one minute to sit or lie down on the floor and not fall suddenly with the risk that this implies.
As a mother, I have dedicated these 28 years to look for solutions, inter-consulting with many neurologists, specialists in neurometabolism, surgeons, with no results. We are currently testing medical cannabis but it has not been giving any results. We live in Argentina, which makes us always far away from development.
We are very disappointed by the lack of interest of doctors to investigate, seek new solutions. Here, renowned neurologists do not know that these devices exist, and I do not see them interested in educating themselves. They only consider their Vade Mecum and, as if they were alchemists, they prescribe different combinations of drugs, even though they realize that it does not work.
”To have a device that could warn her a few minutes earlier would be the salvation of her life
In short, as a mother, I can share a story of exploration, frustration, fear and the worst thing is that I know that, while I try to take care of her, I limit her many times without wanting to do so in the attempt that the next crisis does not produce a serious injury.
After all these years, Ariadna has a slight mental disability, with some deteriorated functions such as language and reading-writing, a matter that has taken her out of normal school, assigning her for many years to special schools, which in Argentina, do not work as they should. They match downwards people and hardly motivate them with useful techniques to develop different capacities.
Ariadna is a beautiful girl, today a beautiful woman, a compassionate, creative, excellent singer, but her virtues, are always shaken by the ghost of the next seizure to come.
Greetings to all.
