Health Ministry’s pharmaceutical department, in coordination with Novartis Egypt, has held an awareness-raising event of the sidelines of the Rare Diseases Day, organized by the World Health Organization every year.
The event, entitled “How to survive a Rare Disease?” was aimed at raising awareness among patients, their families and doctors on how to handle such diseases. It also focused on bone marrow fibrosis, which is a rare disease that is often inaccurately diagnosed.
Mervat Matar, Cairo University hematology professor, said that bone marrow fibrosis consists in the replacement of the marrow with scar tissue, which makes it unable to produce enough blood cells, causing enlargement of the spleen, anemia and white blood cells shortage.
“There are no accurate estimates regarding the prevalence of the disease in Egypt, due to lack of appropriate research and awareness. The average age of patients is 50-60 years, but in Egypt some patients suffer from it at the age of 20-30 years,” she said, stressing the necessity of early diagnosis and treatment.
Mahmoud Diaa, head of the department, said, “The disease is diagnosed when it is already advanced, given that is is rare, and that splenomegaly is common in Egypt due to Hepatitis C and Bilharzia. This often causes the diagnosis to be inaccurate.” He added that the disease could be diagnosed one or two years after infection.
“We would like to take advantage of this day to highlight the importance of uniting government and civil efforts to increase the awareness about bone marrow fibrosis disease among citizens and doctrs, as well as methods of correct and early diagnosis," he added.
Edited translation from Al-Masry Al-Youm
