Hemophilia is a Complex Disorder which can not be cured, but its life threatening situations can be prevented with medicine (AHF) support.
HFI does continuous advocacy and representation for Persons with Hemophilia (PwH) to improve their access to treatment and medical care.
HFI is the only National Hemophilia Federation providing education support to Children with Hemophilia (CwH).
HFI provides subsidized / free treatment support (AHF), educate and provide proper information on Hemophilia Care to both Persons with Hemophilia (PwH), their families and the medical fraternity.
HFI does awareness campaigns to make treatment available free at various state hospitals across the country.

It is rightly said, “never give up because what appears to be the end, may actually be a new beginning”. My name is Vinay Nair, suffering from Hemophilia A, less than 1% with inhibitors since last 14 years.

To start with my life start from school day. Till 4th std, I enjoyed going to school-studying/playing. My attendance in school from 5th to 10th standard used to be just 2 or 3 months in a year. Well! My Teachers, Classmates always took utmost care of me and my be because of this, my tomfoolery behavior totally vanished. I don’t have any good memories of my school days, as I hardly attended the school. I didn’t have close friends till I was 16. But whatever unfortunate things happened in my school days, I learnt to take care of myself. As it is said, “by  every mistake you commit, you start learning from it”. Even after taking utmost care, I used to have frequent bleeds in my joints. Whenever I used to gain confidence, I lost it completely by getting fresh bleeds.
    
Vinay Nair

The worst part in my life was, when I was to attend the SSC Board Exams (10th STD). I was all prepared for the examinations, when I got psoas bleed. I got admitted in the hospital a week before the exams and was sure that I will be out in a day or two but was hospitalized for 33 days. Again, I started studying positively keeping one thing in mind that I just needed to attend all papers. Well, I could again attend only a few papers after 6 months. Finally I could clear my SSC after one year’s gap.

As I was suffering from inhibitors, I needed Feiba which was in shortage most of the times or at an unaffordable price. Many times when I used to get disheartened with these kind of obstacles, my mom used to tell me “whatever happens, it happens for good and there must be something good planned for you”. I used to wonder what “good” thing is happening or will happen in my life except the pain that I go through time and again, losing one of the most important exams twice with no friends to share with, shortage of Feiba, unable to commute in public transport etc.

Next year, I was in college with full of hopes of meeting new friends, new environment. It was difficult to explain to the Professors about my low attendance but with the help of Doctors and parents they stood convinced. There I met new friends, who became very close to me. Now I knew why that one year gap and the harsh obstacles were there, so that I can meet a very good set of friends in my life. Today I am through with MBA, after Graduating in Commerce from the University of Mumbai.

Well talking about my family, they always supported me. When I was small and cried in pain for whole night , my mom used to tell me, “don’t worry, within 2-3 days you will be fine”. I know they were not able to sleep for the whole night by looking at their son in pain and next morning they needed to go to office. As years passed, I withed/vouched that pain or sufferings will not come in my way of success. I learnt to take maximum advantage of my pain free days and concentrated on my studies. My dad used to encourage me a lot, but unfortunately I lost him when I was 13. For more than 10 years my elder brother Ajay was a strong pillar, replacing my dad’s duties, encouraged me. My Aunt took utmost care of me since my childhood, and now I have a sister-in-low with whom I can share & bond very well.

I am very thankful to my family, friends, doctors, Hemophilia Society and each individual who is a part of me. Especially Hemophilia Society provided Feiba/pain killers during my bleeds. I was given psychosocial support by the members and doctors. Also I learnt a lot in the camps organized by the society right from discipline, leadership, hemophilia management, self-infusion etc. I found very good friends in the camps with whom I have a strong bonding. For all that they have done for my well-being, I won’t be able to repay by any means, but I can sincerely assure them that I would fare well in my life and make each and every individual feel proud that they were associated with me .

To every hemophilic, I can only say one thing, life gives you two ways to look at, it is up to you how you need to look at life, whether to stay a pessimist or an OPTIMIST.

The road to success is not straight
There is a curve call failure,
But if u have a spare wheel call determination,
An engine called perseverance SUCCESS will be very far from you

Real Life Stories

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  • The power of Optimism

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INITIATIVE ON HEMOPHILIA CARE V


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INITIATIVE ON HEMOPHILIA CARE IV


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INITIATIVE ON HEMOPHILIA CARE III


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