Equitable Access for All:
Recognising All Bleeding Disorders.
World Hemophilia Day is observed on April 17 every year. Hemophilia is when the blood does not clot properly, and the bleeding continues due to the absence of some essential clotting proteins. What makes things complicated is that ~one-third of those born with haemophilia have a new mutation. Hemophilia does not discriminate. It affects people from all backgrounds. Hemophilia represents a high-cost, low-volume disease. Currently, 257 thousand people are suffering from this disease. There is no cure yet. Currently, it is being handled by injecting missing blood clotting factors. When it comes to bleeding disorders, each individual’s journey is unique. Practitioners of homoeopathy believe that the treatment offers hope. The only way forward is to be empathetic with the patients and, more importantly, the family members. Provide methods to make their life as normal as possible.
Bleeding disorder means community – a community that deserves recognition and one that needs our support.
Cesar Garrido, WFH President
World Hemophilia Day is observed on April 17 every year. The observation started in 1989 by the World Federation of Hemophilia, and the day was chosen in memory of the organisation’s founder, Frank Schnabel’s birthday. Hemophilia is when the blood does not clot properly, and the bleeding continues, leading to complications. Doctors say it is due to missing some essential clotting proteins. What complicates things is that ~one-third of those born with hemophilia have a new mutation. Initially, the disease was called haemorrhaphilia, subsequently shortened to hemophilia. It is a special day for people dealing with hemophilia, bringing awareness and helping those dealing with it.
The manifestation differs. It could be bleeding into the joints, skin, mouth and gums. It can also manifest when people take shots or even get vaccinated. There is a possibility that 50% of the sons born to mothers who carry the hemophilia gene will also be affected, and a 50% possibility of the daughter being at risk of being a carrier. There are several different types of hemophilia. Hemophilia A (Classic Hemophilia) and Hemophilia B (Christmas Disease) are common. Most cases of Hemophilia are congenital. In rare cases, Hemophilia can develop later in life (late-onset Hemophilia) and is more common in women. Some people also suffer from Acquired Hemophilia.
Hemophilia was not discovered until the 10th century. The disproportionate number of deaths (males) due to seemingly minor accidents was referred to as Abulcasis. It is also called “the Roya Disease”, as it was believed that Queen Victoria of England was a female carrier. It was 1803, and Dr John Conrad Otto, based on his research, concluded that it is a genetically inherited disease. In 1937, hemophilia was classified as a genetic disorder in 1937.
Hemophilia does not discriminate. It affects people from all backgrounds. Hemophilia represents a high-cost, low-volume disease. In 2000, it used to be 1 in 10,000, but it has grown to 11.25 lakh people by 2019. Currently, the number is put at 257 thousand people. Ironically, only 25% of those affected had access to adequate treatment. The cousin of Hemophilia is Von Willebrand Disease, and more than 100000 people are suffering from the same. Other bleeding disorders impact about 70000 people. In India, there are close to 20,000 Hemophilia patients, and the experts fear that this number can go up to 85,000–100,000.
There is no cure yet. Currently, it is being handled by injecting missing blood clotting factors. Infusing (administering through a vein) commercially prepared factor concentrates. When it comes to bleeding disorders, each individual’s journey is unique. Practitioners of homoeopathy believe that the treatment offers hope and complementing therapies that pave the way for a comprehensive model of care.
The appeal is to wear red and make landmarks worldwide, such as “Light it Up Red,” in the name of World Hemophilia Day. Â
What can we do? Â
Raising Awareness
Find Funding ResearchÂ
Support People with Hemophilia.
Nature throws challenges, and Hemophilia is a genetic disorder with no cure (yet). The world is busy trying to find solutions to the destructive practices of the past to save the planet. Diseases like these remind humankind that there are many problems to be sovled. The only way forward is to be empathetic with the patients and, more importantly, the family members. Provide methods to make their life as normal as possible.
Toons: Shreya Â
Logs: M. Sai Baba
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