Josefina Calixto is aware that the rare disease that her husband does not have the cure and recognizes that the art of living with one of these concerns constitutes a continuous learning experience for patients and their families.
“On occasions and ransoms, but he has to follow”, Josefina explains to Efe.
Since the new Arantza, its little one, suffers from the strokes of Glanzmann’s Thrombastenia, it is a rare fact that the provocation is driven and that the impediment leads to a normal life.
“It’s not going to school, because it’s got drunk, a few days ago it’s a day off and nowhere, depending on how comfortable it is to be safe,” he explained.
The pequeña is one of the millions of patients that have undergone a rare infestation in the world, the numbers being denominated because affected at least 5 out of every 10,000 inhabitants in the world.
Daniela Morales, a specialist in neurology, estimates that there are 7 million people in Mexico living with some of the 6,000 rare inhabitants.
Since 2008, it has been known that February is the only month for only 28 or 29 days, commemorating the World Day of the Rare Sick in the last day of the month, with the finalization of visibility and concession to the people on this dolencias.
“I wish I had a rare disease, I do not know it exists, but now I have 10 years of this disease, it is difficult,” Josefina confesses.
Explanation probe
Juana Inés Navarrete, head of the Genetics Hospital of the Central Hospital of Alta Mexican Species Specialty (Pemex), explains that these nurses have 80% of the genetic origin, which is what the Mayor says is hereditary.
Josefina has been searching for hundreds of times in her familiar family the antecedent of some rare disease and always the answer is the same: there is no explanation
“I do not have antecedents. But I do not know what I know and what I do, because I do not know what I mean by what I say to you, why do I have to do it?”
Glanzmann’s Thrombastenia, according to the expert, is a hereditary hemorrhagic thrombosis, which has the cadence of the ability to form a plaque tap, which affects the coagulation system.
“There are no things that can happen, at the moment he is going to sing, he is going to be safe, he is going to come by the narcissist, the boca, the oidos, his intimate parts, it is very frustrating”, Josefina said.
Enfermedades olvidadas
In Mexico, information leaks are precise about rare diseases, including coagulation lesions, such as Arantza.
“If we live in a world that intends to be inclusive, with the rare diseases that are not true”, says the doctor ..
Explain that although it does not have a high frequency, it does not seem to be inappropriate and suelen to confuse with other nurses and, including, a few do not know how to count.
“These people use a peregrine to log diagnose and, if not diagnose or treat”, refiere.
It is safe to assume that patients are late in the month and, including, we can count on a detection of their illness.
Dr. Daniela Morales reports that there are patients who can be late 9 years or more to read a diagnosis and the main symptoms are present in the infant.
High costs
These nurses represent a challenge raised at all costs to treat a sister like the paddy Arantza.
“I do not have social security, I was forced to work in December because of the pandemic. Antes, for the less popular Tenure and I will eat some things, but now and then”, Josefina lamented.
Without embarrassment, he makes sure he tries hard to avoid getting his peonies without “even complicated” therapies and the pandemic by covid-19 also makes it harder.
“In another place where we go internally and do not have plaques, even if we go to the hospitals, we can only do them without therapies”, agrees.
Finally, Josefina makes sure that these nurses are emotionally charged to the whole family: “I have hypertensive vomiting, I have had nervous colitis, but here we have it, although some of us want to get out of it.