World bleeding disorders registry to be launched, aid treatment of hemophilia


Mombasa, KENYA: The World Federation of Hemophilia is planning the launch of a World Bleeding Disorders Registry before the end of this year, with the aim of compiling a database of the population of patients suffering from the condition.

Kenya was one of the African countries involved in piloting the World Bleeding Disorders Registry.

Ms. Irene Chami, Regional manager, Eastern, Central and Southern Africa at the World Federation of Hemophilia, told Baraka FM that the main objective for the World Bleeding Disorders Registry is to collect data from all countries of the world.

“This is a registry that will enable us to collect data from all the countries in the world on hemophilia patients, and the reason why this is very important is because some of our advocacy would require to present data of what the situation is per country.”

” It will also help us to identify what are the needs, what are the priorities per the country and where should we focus our attention and support on.” She said.

Speaking on Friday, during the official opening of the first Hemophilia clinic in the Coast General Hospital in Mombasa county, that will serve hemophiliac patients from all six counties in the coastal region, Ms. Chami said that Kenya has been in the forefront in submitting data on Hemophilia to the World Federation.

It is estimated that 75% of people with hemophilia in the developing world still receive inadequate health treatment, or do not have access to treatment at all.

Programme manager at the Novo Nordick Haemophilia foundation Mr. Shady Sedhom applauded the move of the World Federation of Hemophilia in launching a bleeding registry, saying it will help in advocating for improvement of health services to hemophilia

“Initiative to have a worldwide global data is very important this will help to better advocate in national and international level to improve care for hemophilia patients. It is an important step and I believe that Kenya will benefit from it.” Said Mr. Sedhom.

Although data from the Kenya Hemophilia Association indicates that 4,300 people are already hemophiliac, only 650 people have been identified and are on treatment.

Dr. Kibet Shikuku , Chairman of the Kenya Hemophilia Association, has urged Kenyans to be in the look out for hemophiliac patients, so that they can be started on treatment as soon as possible.

Some of the symptoms that hemophillic patients exhibit include: Unexplained and excessive bleeding from cuts or injuries, or after surgery or dental work, many large or deep bruises, unusual bleeding after vaccinations, pain, swelling or tightness around the joints, blood in urine or stool and nosebleeds without a known cause.