The Hemofilia en Positivo Tour made its first stop in Panama, bringing together patients and families of hemophilia patients and medical specialists from Latin America, with the purpose of generating an exchange of scientific information and experiences in the use of new treatments and their positive impact. in the quality of life of those who suffer from it.
The event was presented by the renowned international journalist, Glenda Umaña, ambassador of Hemophilia at Positivo, who announced that “the initiative seeks to give a voice to patients with a disease that currently affects some 57,000 people in the region and of which very little is said.”
“I love being in this beautiful country for this meeting, Panama has been chosen to start the Hemophilia Tour in Positive”, said Umaña
In Panama, 14 of the 284 registered Hemophilia A patients have started using a new treatment of proven efficacy. “The Hemophilia en Positivo Tour seeks that all patients receive these treatments, as is happening in Uruguay and the Dominican Republic, where our patients have left hospitals and wheelchairs to lead a normal life,” said Dr. Alfred Cruz, international pediatrician who participated in the meeting.
On how the quality of life of patients with hemophilia has improved due to this type of encounter, Umaña commented on the experiences he has had with people who suffer from this disease «I met a mother with two children with hemophilia aged 15 and 6 and He told me crying, he doesn’t suffer anymore, we don’t suffer like before, he can play now, he can go to school, another mother told me very moved that her son, when he was 7 years old, that his life was different told him, Mom, one can to be happy, very moving and these new opportunities and as the World Federation of Hemophilia says, access for all but not only access but quality of life.”
Hemophilia is a rare bleeding disorder in which the blood does not clot properly. Symptoms begin when children are very young and bruises appear. What for a healthy person is a small wound, for a person with hemophilia can represent life-threatening bleeding
