A Journey with Hemophilia :

I would like to introduce myself as Dr. Srinivas from Hyderabad (India) & share my journey of life with Hemophilia. It's really a big question, why in this great and beautiful world God has given such a big “PROBLEM” like HEMOPHILIA” & that also to me at the age of one & half month!

With severe hematoma due to Hemophilia, I got my first treatment at NILOFER Govt. Children's Hospital & you may find it surprising that now I am serving as junior Doctor in the same hospital. It's a miracle that in Hyderabad chapter of Hemophilia Federation with no support and proper infrastructure I have been able to survive and come out successfully. The journey to become doctor was not at all easy and one can guess how difficult it is in India to achieve this feat.
I belong to a middle class family. My father is a police constable and mother a primary school teacher. I have an elder sister and a younger brother. My parent's monthly income was just enough for meeting our daily needs.  In my childhood days when I used to get hurt while playing, there wasn't enough money with my parents to buy Factor VIII and my father used to give his own blood, as we both have same blood group. This happened several times.

By birth I was diagnosed with <1% of factor VIII level (a severe hemophiliac, where more than 20 times being infused with wet products). The availability of Factor VIII assisted me to reduce pain with frequent infusions. It really takes lots of courage and guts to inject in the veins with own hands when the near & dear ones are not around.

It is not common to have knee, elbow & shoulder joint frequent bleeds. Frequent knee heamorthroses made my right knee cripple at the age of 10 yrs, adding more pain and disability and further making my life more uneasy. On an average yearly 150 to 170 times my joints bleed, making the exams times more tense and nervous. The tension of doing well in exams added more mental strain & made me to bleed more frequently.

From my childhood, I wanted to become a professional doctor and study more about hemophilia. This urged me to become a doctor overcoming all challenges. My will power and the support of my family, schoolmates and friends helped me confronting all hurdles. In my school days, frequently I used to suffer from knee bleeds making me unable to complete the studies. During that time my friends & teachers helped me a lot.

In the junior college education which is a door step to join medicine,  it became more severe and I had to cope-up with serious studies to achieve medical seat bearing the  pain, sleepless nights, over stress, pressure from the tutors etc. All these memories makes me feel great/proud for having crossed the challenging past. I got admission in Osmania medical college and the days used to be very hectic with lots of pressures to clear the annual exams.

The tension for examination & studies made me to bleed more frequently & I use dot writhe in pain. Silently I suffered but never revealed my agony to my professors or friends. Getting favours or sympathy makes me uneasy and irritating. I never wanted to get any kind of sympathy from any one. A common person suffering small injuries, fevers and pains can get relief with common medications, but I cannot take a pain killer easily. I have to depend on only “CROCIN” tablet which relieves temporarily.

The life is a curse for some people. Inspite of all hurdles but I have done it. Now I am a doctor and confident of treating patients with hemophilia in Hyderabad.

The power of Optimism :

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.

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.

We Make Difference :

At 21, soft-spoken Mahalingam, a PR from Cochin is nothing short of spectacular. From what is supposed to be the first major academic benchmark in Indian System of Education (that is, Grade 10), where he scored an aggregate of 95% marks, to date, where he has cracked the Graduate Aptitude Test in Engineering (GATE) with a percentile of 99.51% and an all India rank of 524, which will fulfill his dream of perusing M Tech In Computer Science.  The other feathers in his hat include those of scoring an aggregate of 93% in +2, cracking the Government Entrance Examination for Engineering with an overall rank of 2179, and securing 83% in his Bachelors in Technology (Computer Science).

However, even with such promising and encouraging figures to place on record, there is one thing that he needs to still conquer: Hemophilia! Being severe Hemophilic (less than 1%), he has undergone so many issues from his young days and somehow with the grace of God he has reached this stage. He has been an achiever.

Towards a brighter tomorrow !
   
Twenty three years old Vipin Singh hails from Jaunpur district of Uttar Pradesh. He had once lost all hope of living for a number of reasons; a Hemophiliac who also suffers total disability. Four of his younger brothers, Ravindra (24), Vikas (18), Beauty (16), and Vinkoo (14) are partially disabled too. They come from a family that can’t afford expensive treatment for every bleeding episode, which means the other four brothers will subsequently surrender to total disability too. To add to the brothers miseries, life took an ugly turn when their expecting sister committed a suicide. The reason was to avoid another Hemophiliac in the family.

Hemophilia Federation India through Varanasi chapter personally approached Ms Laureen A. Kelly, president of the Save One Life (SOL) project to help the
brothers out, both psychosocially and financially. Thanks to the combined efforts, the brothers were counseled and given some hope. Not just that, all five of them are now covered under the SOL project which ensures them a quarterly support of $240 (INR 10, 800) a quarter. These young lives are certainly moving towards a healthier tomorrow.

Of will, and the way ahead !

The story of Kamlesh Pal is not just another HFI success story. It’s about how he challenged whatever life had in store, with a smile. Married with two children, this Varanasi based man was an enterprising dreamer, but a frequently bleeding Hemophiliac at the same time. Enrollment into Post Graduation and a decent job was what he wanted after he completed his Graduation with great financial difficulty, but with even greater will power.

Realizing his practical dreams and the underlying determination to make them come true, HFI got Kamlesh included in the Save One Life (SOL) project. This takes care of his financial needs of his family and education. He is appearing for examinations through Indian Technical Institute (ITI). As a mark of gratitude, Kamlesh helps doctors in the care of Hemophiliacs, for he has the basic knowledge of medicine and can empathize well with them. All said, the will in Kamlesh finally got a way!

My name is Amit Khuva. I am a 15 year old mimicry artist. I was born with Hemophilia and have been struggling since then, facing many problems both physically and mentally because of the disorder. I remember how I used to get hurt, and my blood would not clot like my other friends’, and I had to take extra care of myself. Also, the expensive injections that help manage bleeding would always come as a burden to me and my family.

But during this entire struggle I have built upon the art to make people laugh. I have been performing as a mimicry artist for last three years. I have done more than 300 live shows and around 35 TV shows. I have tried to make people smile through Chhote Miyan, a comedy show in Colors Television.

At the age of 15, I have forgotten my sorrow and wish happiness on others’ faces.

For a better Life :

Twenty five year old Gayatri is a Hemophilia carrier. She had a daughter. Before giving birth to a second child, she wanted to know whether it had Hemophilia or not. This could be only determined by a prenatal diagnosis. Being herself a housewife and her husband having a low income, she could not afford the expense of the diagnosis. She approached HFI which arranged for a donor to sponsor her prenatal diagnosis and soon the test was conducted at the nearest testing center. Her traveling, lodging and boarding costs during the test, along with the guardians were also sponsored by the donor.

In the pre-natal diagnosis, her male child was found to have Hemophilia A, that is factor VIII deficiency. On discovering this, she decided not to give birth to the child as she was aware of the sufferings associated with Hemophilia. Fortunately, it was totally safe to do so as this test is done at a very early stage of pregnancy. Today, Gayatri is happily living with his

Their prayers were heard :

Farooque Sheikh is a 13 year old boy from Mumbai. He lives with his parents, a brother and two sisters. He used to bleed frequently from knee and arm hand joints. With a family income of INR 2000 per month, the family could not afford the expensive Anti Hemophilic Factor (AHF). More so, his brother is also a Hemophilic. Therefore Sheikh had to miss school and stay back home in pain because of the bleeds for days together. He was at the risk of getting disabled if not given proper treatment.

After getting Farooque registered, HFI not only gave him and his parents proper guidance on Hemophilia management but also forwarded his details under the Sponsor a Child scheme (SAC) and got him a donor who donates free AHF to him. Today, Farooque gets free AHF from his donor every quarter. Although the donated AHF is not sufficient to manage his bleeds totally, but nevertheless, this support enables him to stop bleeding quite a few times, specially during his exams. He is able to attend school more regularly and can therefore, study better.

This help not only protects him from the immense pain and sufferings associated with the bleeds but also from the probable risk of disability and death from the bleeds. He now leads a better life.

I BELIEVE I CAN FLY …    WITH MY WINGS OF BELIEF :

I am Vismay.  Vismay means wonder.  I do not know what wonder my parents have seen in me.  But lately, I started believing that they are not wrong, as things are turning in that direction.

Last week my father received a phone call from Mumbai informing that I have been selected for an All India Competition.   Oh!  I have’nt told you what competition I am participating.

It all started four years ago.  One day a close friend of my father came to our house from Chennai.  He was Padmashri Kalyanasundar, a renowned Violin Maestro.   While talking, my father mentioned Sundermama (as I used to call him) that I was good at music.  He called me to his side and blessed me heartily and advised me to

join violin class.  It was a turning point in my life.  I started my lessons with an old violin.

After four years, I could give my first stage performance at Pune.  I am still continuing my violin class paying monthly fees of Rs. 450/- apart from incurring travelling expenses.  Recently a State Level Violin Competition was held in Pune for children below 10 years.  I had participated in it.  The telephone call from Mumbai was to inform the result and invite me for an All India Level Violin Competition to be held at Shanmukhananda Hall, Mumbai.   

If I win the competition, I will be performing at Rashtrapati Bhavan, New Delhi in front of the President, Prime Minister and other great people.  I sincerely wish that if I get this Scholarship sponsored by Baxter, I can buy a new violin for the performance and pursue my higher studies at a music academy.

Now let me dedicate more and more time to practice violin so that I can fly higher and higher to reach the sky.

Vismay Vinodkumar Menon
Chinchwad, Pune, Maharashtra