Haemophilia laboratory diagnosis training and care in rural communities in Sudan

Abstract

Sixty nine per cent of people with hemophilia symptoms in rural areas were accessed to laboratory diagnosis and care support in Sudan, where technical expertise and health care facilities was less than optimal. There were many reasons for the inadequate care of hemophilic patients: the perception of rarity of the disease; lacked of laboratory facilities to diagnose the disorder; lacked of understanding of the disorder by patients, their relatives, and even healthcare providers; poorly developed blood bank facilities; and lacked of adequate factor supply were just some examples. The Sudanese Hemophilia Care Association (SHCA) was attempted to address many of these issues by establishing hemophilia care programs and by educating and training healthcare practitioners so that a healthcare team could be organized that attempts to ameliorate these problems and provides treatment options. However, it was possible to manage hemophiliac's patients with limited resources. Strategies for conserving factor concentrates were included education of doctors and patients, prenatal diagnosis, increasing the use of anti fibrinolytic agents, physiotherapy, the use of fibrin glue, and simple orthotics and prosthetic measures. An outreach program would be initiated to ensure that hemophilia care and diagnosis was available outside the capital city. Official recognition of hemophilia laboratory diagnosis and treatment centers and designated centers by the government could also be very beneficial in ensuring adequate care in rural areas in Sudan.