Lyeda is the only patient in Albania who suffers from the rarest form of hemophilia, a blood clotting disorder. She has a deficiency of factor 13 in her blood, a congenital and not inherited abnormality.
Today she is 22 years old and every month she comes from Gjirokastra to Tirana to receive the medication, factor 13, that she lacks in her blood. Years ago, she received this treatment privately in Greece because the medicine was lacking in our country. She says she has learned to live with her illness, even with society's distancing itself from ignorance about Hemophilia.
There are approximately 350 hemophilia patients in Albania. Most of them suffer from a deficiency of factors 8, 9 and 10.
The bleeding disorder mainly affects boys who inherit the disease from their mothers, who in most cases are carriers, without symptoms. On World Hemophilia Day, doctors appeal to young couples planning to have children, especially those with a family history of hemophilia, to get tested for this disease.
In addition to the factor that hemophiliac patients receive every month, last year a medication that keeps blood within normal parameters was added to the list of reimbursable drugs.
Due to the high cost, this medicine only covers 10 children in the most critical condition. Associations of people with hemophilia demand continuous treatment without absences.
Shortly before leaving for Gjirokastra and after receiving the factor 13 that her blood lacks, to prevent hemorrhages, Lyeda says she will not stop talking about hemophilia and the stigma against it. (A2 Televizion)
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