On April 17, medical fraternities around the world get together to mark World Hemophilia Day, a day that has served as a reminder since its beginning in 1989 of the need to increase awareness of hemophilia and other bleeding disorders and their impact on people. Hemophilia is the oldest known hereditary genetic blood disorder that reduces the ability of the blood to clot. Patients with Hemophilia do not have enough clotting factor – a naturally occurring protein that controls bleeding. As a result, even a slight injury can cause excessive bleeding, putting the patient‘s life at risk.
It has been estimated that half of the world’s population afflicted with Hemophilia lives in India, but only 15 percent of them have been identified so far, with the remaining 85 percentstaying undiagnosed and untreated.Detection generally happens only at the time of an injury or an episode of unnatural bleeding.Hemophilia mostly affects men, with 1 in 5,000 of them being born with the condition, and the condition affecting 1 in 10,000 people at an overall population level.
On World Hemophilia day, Dr. Ashok Gupta, Medical Superintendent, JK Lon Hospital said, “In Rajasthan, more than 1000 patients are suffering from Hemophilia. Out of these, 60% patents faces chronic condition which may involve 3-4 times bleeding incidences in a month. Due to lack of awareness, around 85% patients have not even diagnosed or registered for the treatment. However, with the help of Rajasthan Government’s Mukhyamantri Nishulk Dawa Yojna, the patients are being treated at Medical colleges and few district hospitals as the required factors are available in these places. Also, at J K Lon hospital in Jaipur, there is a day care center where patients are getting the required treatment in hemophilia ward.”
“Today, there is a need to register all patients suffering from Hemophilia and develop more comprehensive hemophilia treatment centers across the state of Rajasthan. Moreover, the treatment should also move from episodic supplementation to regular prophylaxis,” Dr. Gupta further added.
Symptoms of Hemophilia
People with Hemophilia (PwH) do not bleed more profusely or faster than normal. They bleed for a longer time than others after an injury. If they bleed inside their body, it can cause damage to the internal organs and tissues,creating a life-threatening situation.
Some of the signs of Hemophilia are bleeding for a long time after getting a cut or during any surgery like tooth removal. Sometime spontaneous bleeding with no clear reasonand tendency to form large bruises can be caused by Hemophilia. Bleeding in the muscles and joints, particularly in the knees, elbow and ankles are some other symptoms. People with severe Hemophilia that suffer a head injury can experience headache, vomiting, speaking difficulties, loss of balance, and changes in vision. They should seek urgent medical attention.
Common forms of Hemophilia
Two of the most common forms of Hemophilia are A and B.Hemophilia A is caused by a deficiency of Factor VIII, while Hemophilia B is caused by a deficiency of Factor IX.
The presence of Hemophilia can be confirmed by taking a blood sample and measuring theamount of Factor VIII and Factor IX.
Treatment and management
There is no cure for Hemophilia. At HemophiliaCentres run by the government, patients generally receive Factor Replacement Therapy to help their blood clotin the event of bleeding. As a result, life expectancy of patients can be improved. They can expect to live as long as 60 years or more.
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