The Daily Star - Beirut commemorates World Hemophilia Day - April 21, 2011

BEIRUT: The Lebanese Association for Hemophilia hosted an event on Downtown Beirut’s Roman steps commemorating World Hemophilia Day Sunday to draw attention to the challenges that Lebanese living with blood disorders and their families face.
In cooperation with global pharmaceutical firm Novo Nordisk and Tele Clinique, LAH convened talks on the issues Lebanese diagnosed with the disease, and their families, must cope with, beyond the medical condition, in their personal and professional lives.
“People with hemophilia and their families suffer from psychological issues in every stage of their lives stemming from shock at initial diagnosis, childhood family tensions and school integration problems, adolescence rebellion and denial due to fear of stigmatization, concluding with issues with adult integration at work and starting families,” said Solange Sakr, LAH president.
The talks featured contributions from the Social Affairs Ministry, the head of Parliament’s Health Committee Dr. Atef Majdalani, patients, family members, specialists and LAH representatives.
Majdalani explained that while Lebanon has laws that protect the employment of people with special needs – such as Law number 220/2000 issued in December 1999 – implementation was lacking. “We supported this gathering [on World Hemophilia Day] mainly to shed light on the need for enhanced laws that support the social integration of people living with Hemophilia, who are often discriminated against in schooling and employment opportunities,” said Majdalani.
LAH also hosted a gathering at the Yarzé Country Club a day prior for those afflicted with Hemophilia to share their experiences and success stories with one another and their families.
The talks highlighted the importance of early treatment and psychological outlets for hemophiliacs, especially early education about the disease.
According to the LAH, many who have hemophilia, a disorder that interferes with the body’s ability to control blood clotting, can live relatively normal and healthy lives with proper and early intervention.
The LAH estimates that there are about 1,000 people living in Lebanon with hemophilia and other blood disorders.