World Hemophilia Day 2021: Understanding The Advancement In Hemophilia Treatment
World Hemophilia Day is observed on 17 April each year. This day tries to create awareness about this rare blood disorder. The theme for the World Hemophilia Day 2021 is 'adapting to change'.
World Hemophilia Day is observed on 17 April each year
- Adapting to change is the theme for World Hemophilia Day 2021
- Hemophilia does not allow the blood to clot
- There are two main types of hemophilia type A and type B
The World Federation of Hemophilia promotes April 17th of every year as the world Hemophilia Day. This year's theme is ‘adapting to change' in view of so many challenges that the PWH across the world had to endure due to the COVID pandemic. Hemophilia is a rare genetic bleeding disorder in which blood cannot clot properly, leading to extensive bleeding caused from a cut or wound. A person with Hemophilia has low supply of factor VIII or factor IX which is required for blood to clot. The amount of these factors in the blood determines the severity of Hemophilia that a person has. There are two main types of Hemophilia – type A and type B. Hemophilia A is caused by absence of clotting Factor VIII, while Hemophilia B results from a deficiency of Factor IX. India has the highest number of registered Hemophilia patients in the world and yet, we have identified only 20% of the estimated number. Health experts believe that approximately 80% of Indians with the serious blood disorder are not diagnosed due to lack of proper diagnosis.
World Hemophilia Day 2021: Treatment of hemophilia over the years
Hemophilia can be treated by replacing blood clotting factors with the help of injecting clotting factor concentrates allowing blood to clot properly. Prophylaxis is the gold standard treatment that can prevent or delay joint disease in persons living with Hemophilia. However less than 10% of PwH in India are getting prophylaxis and that is one area everyone involved in Hemophilia care should work towards. A long-term barrier for prophylaxis treatment is the cost of treatment.
“Over the past decade, advancements in Hemophilia research have been deafening. Hemophilia treatment has moved swiftly- from using blood-derived products to purer and safer recombinant clotting factors, and from on-demand use to regular replacement therapy (akin to insulin in Diabetes mellitus). Another welcome leap is the development of long-acting clotting factors, which reduce the number of painful infusions. Its largest benefit was amassed by clotting factor 9, which is deficient in Hemophilia type B. This makes possible its infusion only once weekly, thereby improving convenience and compliance, while reducing the total quantity of drug required, said Prof. Naresh Gupta- Medical Consultant & Advisor in Hemophilia, MAMC and Lok Nayak Hospital, New Delhi.
The science of treating Hemophilia has advanced significantly over the years, and we see newer advancements happening quite frequently. Earlier, treatment depended on blood and blood derived products exposing the patients to a lot of blood borne infections. However recombinant DNA technology led a revolution that has eliminated this risk and proven to be safer. This new method of production of clotting factors has also opened newer vistas of modifying these proteins to enhance their characteristics.
Dr. M Mahapatra- Prof & Head, Department of Hematology, AIIMS, New Delhi commented “Hemophilia is seen in about 1 in 5000 live male births. Diagnosis for Hemophilia should ideally happen in early childhood. Until the diagnostic reach is expanded, neither Hemophilia nor severity of the problem can be identified. Diagnostic tests must be performed at extremely specialised coagulation laboratories for accurate diagnosis. It is extremely important to improve awareness regarding Hemophilia and ensure regular check-ups are conducted, especially if one has a family history of the disease. It is necessary for Hemophilia centres to keep adequate supply of blood and plasma in the current pandemic scenario. It is advisable to minimise hospital visits for people with Hemophilia (PWH) by using telemedicine facility.”
It is extremely critical to diagnose and treat Hemophilia as it can lead to several complications for patients. Bleeding within the joints can lead to chronic diseases and pain. Joints deteriorating although remains a chronic complication for Hemophilia patients, proper treatment can reduce the risk of damaged joints and life-threatening bleeding episodes. Sometimes bleeding in brain can cause long-term problems such as seizures. In some cases, bleeding in vital organs can even lead to deaths.
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