World Hemophilia Day is an international observance held annually on April 17 by the WFH (World Federation of Hemophilia). It is an awareness day for hemophilia and other bleeding disorders. It was started in 1989; April 17 was chosen in honor of Frank Schnabel's birthday. Theme of World Hemophilia Day: Lighting it up Red in 2017.
Hemophilia is a genetic disorder in which the patient tends to bleed excessively. The peculiar thing about the transmission of this disease is that only the males suffer from it. The females are only the carriers. Hemophilia is not a killing disease. However, the type of life, it compels the effected man to lead, is such that it is hardly worth living with all the pain and torture and severe crippling of limbs, not a small number of Hemophilics have been known to end their life immaturely. The cause of Hemophilia is the inability of the body to produce the anti-hemophilic factor (AHF for short) in the required quantity. There is no known cure for this disorder. The line of treatment in case of an internal-bleed or external-bleed is to supplement the patient's AHF level by fresh blood transfusion. However, in case of severe injury the blood required may be so much that the heart would not be in a position to take the load. Hence the need for concentrates of AHF.
Hemophilia is usually inherited and about one in every 5,000 males is born with the disorder. It cannot be caught or transmitted except through inheritance but can sometimes occur when there is no family history of Hemophilia. About one third of new cases are caused by a new mutation of the gene in the mother or the child. In these cases, there is no previous history of Hemophilia in the family. Women who have the Hemophilia gene are called carriers, and they can pass it on to their children. When the mother is a carrier and the father does not have Hemophilia, for each child there is a 50% chance that a son will have Hemophilia and a 50% chance that a daughter will be carrier. The incidence of hemophilia is quite low. Statistics on the incidence of hemophilia vary however, its estimated that in the United States 1 in every 5,000 -10,000 people are born with it.
Hemophilia Federation (India) is the organization working against Hemophilia in India. Also there are several hospitals in different states working for free for prevention of Hemophilia. In Odisha also some of the govt. hospitals like SCB medical College& Hospital (Cuttack), Capital Hospital (Bhubaneswar), District Headquarter Hospital (Mayurbhanj), District Headquarter Hospital (Nayagarh), VSS Medical Hospital (Burla), etc. Since 1983. It aim to reach out to PwH and provide total quality care, education, make treatment available at affordable cost, psycho-social support, and economic rehabilitation and thus help them in improving the quality of life without disability and free of pain. Indian Government also developing various projects with help of different companies as its partners for prevention and to give better facilities to these patients to give them a better life. Some of such ongoing projects with the name of the partners are given below.
Good health & well being as our goal to achieve the sustainable development goal, Niyatee Foundation every year organizing the awareness generation programme for the community people on the occasion of ' World Hemophilia Day' on 17th of April Every year. Apart from awareness generation we are also organizing Health camps at the rural pockets with association with government department.