Hemophilia with inhibitors

Hi! I am Preeta, mother of a soon to be 9 year old, a very smart boy with severe Hemophilia A and inhibitors. We are Indians but presently residing in Bahrain. Our journey with hemophilia started 7 years back. The journey has been challenging and bumpy so far but fighting it out day by day. We all know that how much we have achieved today in the field of treatment for hemophilia, with such wide range of products for both Hemophilia A and B but risk of development of inhibitors is still there in the same range with all these products. The treatment option for inhibitors is still the same from all these years with no 100% or sure shot results. It is high time now to show more serious interest and action in the developments for the treatment of inhibitors. We all know that present available treatment for any bleeding disorder is not easily accessible to all across the world. Basically 75% of the world with hemophilia are leading difficult life because of very little or no treatment due ...

Last year I met a wonderful lady, an amazing mother, a wife and I know many other roles that were hidden inside her.   I was waiting with my son and husband in the Haematology Dept. of CMC Hospital Vellore, that was May 2014. I saw a very simple and pretty young lady, skinny, well groomed in a very simple but pefectly pinned and draped saree. She was talking in hindi(manageable)to the hemophilia coordinator n was finding difficulty in conveying things to him. I could see that she didn't know English either, so I stepped in to help her out. After that we introduced ourselves. She told me that she came all the way from North east of India for her son's treatment and had spent already a month over there. That day nothing more than that we spoke to each other as we both had our appointments n engagements and moreover I was in a different state of mind as we had gone their for our son's checkup. We were there in the hospital for few days so we passed each other 2-3 times...

  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...