Hemophilia with inhibitors

  As if Hemophilia itself was not enough for us that we got a topping of inhibitors Hello everyone! This is Preeta, a full time mom and it's about my 8 year old son who has severe Hemophilia with inhibitors. Some say that it's just a health condition and it should not rule our lives but in our case, it does rule our life. Becoming parents is very easy but being good and caring parent is a difficult task. Never thought, it will be so difficult!!! Life was all beautiful till 15 months after my son's birth. And then in June 2007, a cut inside his upperlip changed our whole world upside down. The bleeding didn't stop for 3 days and then he was diagnosed with severe Hemophilia A. It was a shock to us as we never heard this word earlier. Being math students, both me and my husband never heard or read anything about Hemophilia. Leave us, most of the doctors also don't know anything about it, except that they had to learn a page on...

Genetic disorders are rare conditions that are given a low public health priority in India , even though these account for significant suffering of patients and their family members. There is no insurance and no free or affordable treatment! India is the second most populous country with almost 1.2 billion people in the world but the numbers of PWH (people with hemophilia) on paper/registered are very few i.e.16000 approximately. Incidence of hemophilia is 1 in 10,000. So a small calculation would give you the idea of number of PWH undiagnosed yet in India i.e. 1,00,000 approximately. That’s a huge number! India is among one of the lowest using AHF countries. The extremely low per capita use of treatment product, despite having the second or third largest number of global patients with haemophilia A, illustrates the large treatment gap that exists in the country. Due to lack of awareness many PWH don’t even know what exactly they are suffering from and are treated for something e...

HEMOPHILIA is a rare bleeding disorder and a genetic co ndition that affects the blood's ability to clot. Normally, when you cut yourself substances in the blood known as clotting factors combine with blood cells called platelets to make the blood sticky. This makes the bleeding stop eventually.However, in hemophilia there are not as many clotting factors as there should be in the blood. This means someone with the condition will bleed for longer than usual. The condition is passed to a child by one or both of their parents or child can get this by spontaneous mutation. A person can have one of two types of hemophilia, A or B. It depends on which clotting factor they are low on. If someone produces 1% or less of the affected factor, the case of hemophilia is called severe. Someone who produces 2% to 5% has a moderate case, and someone who produces 6% to 50% of the affected factor level is considered to have a mild case of hemophilia. How anyone gets Hemophilia? Hemophili...