Yemen: Fighting hemophilia through volunteerism
Abdul Hakeem Al-Sabri lived a happy childhood in Yemen, despite the pains and complications of his condition. The 27 year-old suffers from hemophilia, a rare genetic disease characterized by the body’s inability to clot blood.
However, what many would consider a weakness, Hakeem has turned it into a strength, and has used his disease to spearhead voluntary initiatives in Yemen.
Hakeem completed his undergraduate studies in Management Information Systems in Yemen. But getting a job was not an easy task, as his condition makes it difficult to work two months in a row without health complications. The disease causes a series of difficult conditions, such as repeated bleeding in the joints or internal bleeding.
Yet, he did not let this discourage him, and kept on investing in his education and his health, through training courses and staying informed. “Finding a job is extremely difficult, especially in a society where patients are considered outcasts”, says Hakeem, who did not despair in spite of the numerous failed attempts to get employed.
Instead, he changed the difficulties of his past into a project, and in 2012 launched the initiative Pulse of Life to Support Patients with Hemophilia. This project aims to support and motivate patients suffering from hemophilia and their families, to integrate them in society and make them an active agent for social change.
Healthcare is a priority development issue in Yemen, in part due to the scarcity of qualified health workers and adequate medical infrastructure. Healthcare gaps contribute to lack of awareness regarding certain issues, which often require qualified health workers who can train and develop capacity in the community.
This youth-led voluntary initiative attempts to bridge this gap with regards to hemophilia, a disease that is relatively unknown in the country, and that puts many of its patients at risk of social exclusion. Its activities include supporting patients with hemophilia, providing them with free and updated information, and working alongside doctors and specialists who can provide a better quality service to people suffering from hemophilia.
Through networking and advocacy, and with the hope to raise awareness on this rare disease, Pulse of Life to Support Patients with Hemophilia has reached key decision-makers in Yemen. Their commitment and hard work also achieved, for the first time in Yemen, the celebration of World Hemophilia Day, on the 17th of April in 2012.
The event was attended by Yemen’s Prime Minister, Mohammed Basindawa, and marked a change in the attitude towards hemophilic patients. At that moment, the Ministry of Health also responded positively to the initiative and increased the amount of needles produced for blood transfusion from 20% to 60%.
Hakeem and his peer volunteers wanted to be the “owners of will, determination and effectiveness in a society that suffers many problems”, he explains. Since the inception of the project, activities have included, among many others, a blood donation campaign on World Blood Donor’s Day, training patients and coordinators in improving their employability or participating in International Volunteer Day, in 2012.
The next step? To find partners to provide financial and technical support to patients with hemophilia, and to ensure that this disease does not go unnoticed in Yemen.