By Pedro Izzo.
Samuel is the younger of 100 hemophiliac patients in Guarico state in central Venezuela without access to his treatment. His mother, Manuel Pereira, who is the regional spokeswoman of the Venezuelan Hemophilia Association -AVH by its acronym in Spanish-, said that the organization had registered 5.168 patients whit this disease in the country.
The AVH declared last April 19th that 70% of hemophilia patients, at least, are suffering irreversible joint damage due to the lack of treatment, which must be provided by the Social Security Institute.
The organization requested the Venezuelan government the dotation of the needing medicines that hemophiliacs patients.”Do the shops and distributions that they need to avoid that people with this disease keep dying.”
Fall and learning
What for other any kid is just a fall and a scare, for Samuel is means absent from classes for almost six weeks. The school accident happened last December, and since then, his friends are more careful with him.
After receiving a talk about the meaning and the consequences of hemophilia, Samuel’s friend now understands that a stumble and even tickle causes him bruising that can produce him severe injures.
“After that falling in the school, he was in rehab by the bruise in his leg, with no school, but thanks God, he healed, and we get over it together, although it is distressing to know that he has no treatment and anytime an emergency might occur,” said his mom.
To the lack of clotting factors, the Marielby’s options to help his son are few. The only thing she can do is give him acetaminophen, ice, and some gel for the bruise. Other medicines as anti-inflammatory steroids are not proper for Samuel.
Hemorrhages are a big concern in hemophiliacs patients, especially without access to the right treatment. “A few days ago, Samuel had oral bleeding that lasted two weeks, were several nights without sleep. It is horrible to see your son covered with blood in the middle of the night. I don’t wish that to anyone,” Marielbys said.
Samuel’s mother wants to preserve the life of his son, but the Coronavirus lockdown prevents her from seeking medicine in other cities of the country.
“Samuel is a smart and talented boy, he practices swimming and is a member of the Guarico symphonic orchestra. The only thing he needs for a complete and happy life is his clotting factor,” claims Manuelbis.
A battle for life
According to the figures from the Venezuelan Hemophilia Association, at least 65 hemophiliac patients died from 2016 until December 2019 in Venezuela, due to the lack of clotting factors. 30% of them were minors patients.
As spokeswoman of the AVH in Guarico, Manuelbis Pereira said that during 2019, the Venezuelan government bought only 1% of the treatment that patients in the country need, and it was not enough for people in her state.
Samuel’s mom asks the Social Security Institute to do their job and buy of the clotting factors this 2020.