Guilt, stigma and fear at the time of diagnosis are the main feelings faced by people with hemophilia in Latin America. There is therefore a need to report on the condition and create public policies focused on comprehensive care.

“I had to deal with moments of great pain and feelings of guilt which intensified when I arrived at the hospital or at my son’s school, and I saw that everyone was terrified by the condition,” said Adriana Angamarca, mother of Adrián, an Ecuadorian, in a living testimony with severe hemophilia A.

Hemophilia is a disorder that makes it difficult for blood to clot, which can be hereditary or develop at any stage of life.

People diagnosed with this condition have hemorrhages after injuries (internal or external) or surgeries, so their care is essential and should focus on prevention and prioritizing prompt treatment, should an unfortunate situation arise.

In Latin America, 55,287 people have been identified with the disease in 2020 alone, but at least 103,000 are estimated to be living with the disease.

However, the great ignorance of hemophilia in the region has led to the stigmatization of people, since women are known to be carriers of the disease and pass it on to their children, for whom they carry a feeling of guilt throughout their lives. their life.

Moreover, hemophilia entails additional costs, mainly related to its treatment and its permanent coexistence, which can increase when there is no access to comprehensive care.

A COMMUNITY THAT SUPPORTS

Aware of the need to raise awareness of the disease and the situation experienced by people with hemophilia and their families, carriers, promoted by Roche Latin America, have created the Mothers eXtraordinary community.

It is a space that aims to empower mothers, sons and daughters to lead active and productive lives and to help them continue to fight for a better quality of life and comprehensive care.

Among them, they managed to be a driving force for them to become leaders of support groups that ensure rights and a better quality of life.

Blanca Corona, mother of 10-year-old Emilio, who lives in Mexico, found a light and a path to follow thanks to this initiative, after being forced to put her university studies on hold to devote herself to caring for her son.

Thanks to improved care and quality, she now has time to graduate as an environmental engineer.

“We can control hemophilia, it no longer controls us, and we can join forces to expand the focus on their education. It is important that the sick feel our support, that we give them wings and that they have dreams to fight for and that they can go as far as they want,” he said.

While the Colombian Olga Chica, mother of two children with hemophilia, considered that Madres eXtraordinarias helped her to face the disease of her children, to make them independent adults, without limits and without being victimized.

“Having accompanied them on this path, and without the condition becoming a limitation, makes me even more proud because I can see them today as happy and grateful men for their achievements, even in the world of hemophilia” , did he declare.

Finally, Bolivian Elizabeth Burgoa, who has three children with hemophilia, indicated that education and information were essential to deal with this condition.

“Timely diagnosis can avoid pain and expense. The education of medical personnel is important so that they know the pathology within multidisciplinary teams, guaranteeing a better quality of care for people with hemophilia,” he concluded.

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