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An expression of thanks

September 11, 1977, I (Ashutosh Sharma) was born in the capital of India, Delhi, there was a wave of greetings in my house because after five years of an elder sister a boy was born.
In those days, birth of a boy was given great importance in India, his family’s dreams were associated with his birth that he would grow up and decorate our family’s future but destiny had a different plan for me.
When I was 9 months old, I fell from the bed and got an injury on my forehead. Post this, one night I found my head swollen like I had a blue ball attached to my forehead which used to hurt a lot. My parents consulted many doctors and they gave me medicine but it seemed to be of no use back then. The doctor decided to do an operation of that blue swelling and when he did the puncture in my forehead, he saw that it was filled with blood from inside. He changed his decision and prescribed me pain relief medicine and gave it to my mother and told her to keep me at home and let him rest, it will be cured on its own. After a few months, that wound started to heal and I started living with this unknown disease.
As time passed the condition worsened. It started to bleed from my mouth probably the gums while I was sleeping at night. It filled my mouth with blood and all my clothes and bedsheet were covered with blood. By morning my mouth was completely closed with blood. My mother slowly removed the blood clots from my mouth with wet cotton and after cleaning the clots I was able to open my mouth to eat something. A few minutes later there was a series of bleeding, sometimes severe pain in my elbow or soreness in the knee, and the surprising part was that we were completely unaware about what was really causing it.
When I started going to school my mother would take me but after a few days again the pain and swelling started in my arms and legs and I was no longer able to go to school. It used to happen many times with me, every kind of medicine was administered but everything remained ineffective and there was no improvement in my condition. When I was 9 years old someone told us that All India Institution of Medical Science (AIIMS) in New Delhi is a very big hospital and you should go there for his check-up. When I went there they got my blood tested and a doctor who had taken the training of Haemophilia diagnosis from Italy examined me and told us about the disease named Haemophilia-B. He said that there was no treatment in medical science for haemophilia and it could only be prevented by plasma and blood transfusions. At that time AIDS was very widespread in the world due to blood transfusion and my parents decided not to transfuse blood in due to the ongoing condition. Doctor told us that I had to avoid all kinds of injuries. After the advice given by the doctor, my father lost confidence in me and agreed to keep me at home for the rest of my life, but my mother did not lose her courage and continued my studies by appointing a tutor and my mother kept taking me to school from time to time to get the annual examination. My school life continued with pain and whenever I had a joint pain I could not sleep all night and kept screaming with pain. I kept crying all day and night in pain and made the situation so difficult for me to move ahead. When I was 16-17 years old, I was playing with my friends when I mistakenly hit my head against the wall and it caused deep internal bleeding in my brain. I was brought to Delhi from Jind (Haryana) where a friend of my maternal uncle had heard the name of this disease and informed us about the Haemophilia Society, Delhi and there for the first time in my life I got the life-saving drug called Factor 9 which was injected in my veins and that factor was given to me for 10 to 15 days. At that time the cost of these injections was high and it was not easy to afford for the middle class, but to save my life my father sold his precious land and my life was saved. Due to brain haemorrhage half of my body was paralyzed and it took me one year to become normal.
After that day whenever I had bleeding in my arms, legs or shoulders my father used to buy factors from Delhi Haemophilia Society and got me injected. Sometimes we were unable to buy it due to lack of money and I had to struggle again with unbearable pain but every moment in this fight my mother was with me as a boon which is why it is rightly said “God cannot be everywhere so he created mothers”.
Now I had to move from my city to Delhi in agony again and again for factor infusion whereby my parents decided to permanently shift to Delhi after seeing my illness. After 1 year I started my own business of clothes in a famous market in Delhi. My business went very well but one evening while I was returning home from the shop I met with an accident and my hands got fractured and I suffered a lot of injuries. I had to purchase factors in bulk and was quarantined at home for 8 months. My new business and my hope both shattered due to my health issues.
We left Delhi sometime after and came back to my ancestral home, Jind (Haryana). In 2000 my mother became a municipal councillor of our district and I joined her in social work. After a few years suddenly I got another brain haemorrhage and got admitted at the Lok Nayak Jayaprakash Hospital in Delhi. From thereon I started getting free factors from the government hospital and they injected Factor 9 for several days to improve my injuries. After a lot of effort my life was saved once again,
In 2005 I got married to Jyoti, her family was told all about my illness and Jyoti knew everything and agreed to give her consent for marriage.
In 2006, I was not aware of the investigation of haemophilia in the womb until I was blessed with a girl. My whole family was engaged in celebrating the happiness of my new-born child. Everything was going well in my life and then one day I had a severe pain in my head and began to vomit. After a CT scan we found out that I had suffered from brain haemorrhage for the third time and then the long and painful process. I recovered from it for the third time but my whole family had to bear the mental depression at that time. After a few months, life became normal again and I kept myself busy with my daughter and family, till then my both hands, knees and right hip had worsened by 70 to 80% due to repetitive episodes of internal bleeding. My wife took really good care of me and used to suffer with me though day and night. She encouraged and prepared me to face the challenges of this life. After marriage my mother was able to take some rest from household work otherwise it was becoming very difficult for her because her health was also deteriorating.
In 2010 we had another girl and now I used to do more work to live my livelihood and kept myself busy but the pain returned after sometime and there was bleeding with terrible pain and my whole work and efforts went in vain.
One day in 2014 I got the idea that now I had to do something for other haemophilic patients who were like me so that the pain that I suffered in my life should not be experienced by them. During that time the factor 8 and 9 were unavailable at our local hospitals and anybody who had an episode of bleeding had to travel all the way to Delhi. I started trying to solve this problem with the help of God and my family, I found all the patients of my district who were like me and started a movement in which me and all my colleagues protested to get factors in our district hospital by writing a demand letter to District and State administration of Health Department. With hard work and efforts we got the success and were successful to avail the factors in our district hospitals. Though the factors were availed but the regular supply stayed affected and the factors were not inventoried but always fell short at the time of need. In 2017 we formed our own Haemophilia Society, Jind in which I was elected as the President with the unanimous consensus and then we succeeded in getting affiliation of our registered society from Haemophilia Federation India, New Delhi. Now in our HTC we are getting the supply of humanitarian product time to time through HFI recommendation from World Haemophilia Federation, Canada. Due to this today our district and other adjoining districts haemophilic patients are getting the benefit of this directly, now they and their family are feeling relieved.
Today the scenario has completely changed with the help of WHF and a new hope is clearly visible in our lives.

Thanksgiving
Ashutosh Sharma,
ashutosh@thesharma.com
Haemophilia Society, Jind.
Jind@hemophilia.in
Affiliated to HFI New Delhi, India

Hi

I am Maxine Stander from Kimberley, South Africa. I am a 24 years old and I was diagnosed with Factor XIII deficiency when I was about 1 years old. I am the younger of two daughters and I am the only one that has been diagnosed with Haemophila. Although I have been aware of my diagnosed for basically all my life, I have only recently come to terms with my diagnosis and have undertaken to raise more awareness in my community by sharing my experience and educating with others.

Soy el Dr. Ricardo Villegas Medico Hematologo de la ciudad de Cochabamba Bolivia , actualmente a cargo de la atencion de los pacientes hemofilicos de mi region, y dirigiendo el Comite de atencion del Hemofilico en Cochabamba, que esta conformado por profesionales afines a la atencion de nuestros pacientes. Actualmente nos encontramos abocados a la elaboracion de guias y tripticos .La capacitacion de profesionales, pacientes y familiares es lo principal.

¡Orgullosos de compartir el hermoso encuentro de nuestra comunidad por el Día Mundial de la Hemofilia!

Yo tengo un niño con hemofilia A moderada y esta padeciendo de dolores en la articulación del codo izquierdo y ya tiene una pequeña limitacion al estirarlo y estoy desesperada necesito saber si hay algo q le pueda echar una crema o algo para q logre su estiramiento total

Me entere que tengo hemofilia A a los 40 años después de una cirugía de apendicitis…gracias a Dios estoy vivo ya que sufrí hemorragia despues de la operación,mi hermana que tiene un hijo con hemofilia pudo advertir a los doctores la posibilidad de que mi hemorragia era causada por la hemofilia por lo cual me trasladaron al Hospital de tercer nivel del IESS Esto me sucedió el 13 de septiembre del 2019

I am the mother of a gorgeous 4 month old baby that was diagnosed at birth with haemophilia B. I at the time had never heard of a bleeding disorder but never the less I’m trying to become more educated and aware as I can for my baby. Everyone’s stories are helping my partner and I learn more each day about haemophilia and I just want to thank you all for this.

Hola soy una niña de 4 años con hemofilia A severa. Tengo un hermano con hemofilia A severa. Voy a la escuela me lo paso genial y juego con mis amigas. Vivo en una isla preciosa donde nadie más tiene hemofilia. Mi hermano me ayuda a pincharme y yo le ayudó a él. Mi mami dice que tenemos mucha suerte de poder pincharnos y disfrutar de jugar y hacer deporte, etc. Espero que cuando sea mayor pueda pincharme menos y no tener dolores cuando el factor va disminuyendo en mi cuerpo. Creo que sólo hay dos niñas con hemofilia severa en el mundo. Mi mami no se lo podía creer pero, lo importante es que vivimos en un buen momento y hay mucha esperanza. Un abrazo a todos y todas las personas de la gran familia de la hemofilia. Seguir investigando por favor.

Soy Miguel tengo 5 años a los 5 meses de nacido me diagnosticaron con hemofilia A severa déficit del 0.3 y fue y sigue siendo un proceso muy difícil para mi y para mis padres más porque mi hermano menor de 7 meses al parecer tendrá hemofilia también ya ha presentado indicios.

I am a hemophilia treater. My patients had a poor joint function during the past decades. Now we controlled the bleeding well with recombinant factors. I hope my patients could keep their diligent in keeping them well.

TENGO 4 AÑOS Y A LOS 3 AÑOS CON 7 MESES ME DIAGNOSTICARON HEMOFILIA A SEVERA..

PARA MI Y MIS PAPAS ES UN CAMBIO FUERTE, EN ESPECIAL PARA MI MIS ARTICULACIONES SE INFLAMAN.

I was blessed with this bundle of joy in November 2017. He was everything a mother could ask for.
In June 2018 he started crawling at the age of 6 months, that was when i noticed some unusual bruises around his knees and elbows (pressure points when crawl). I did not take it too serious first, but when it he started showing recurrent bruises with swelling i decided to see a paediatrician. After series of consultations and blood examinations a blood sample of him was send abroad to check levels of his blood clotting factors/ clotting protiens for suspected muscle bleed.
Recieved the LIFE CHANGING reports in August 2018 which showed that his blood clotting factor8 level was at 1%, so was diagnosed with HEMOPHILIA A. That was first time i heard the word Hemophilia.
Hemophilia patients are very rare in Maldives. He is the 18th case recorded as per Hemphilia society of Maldives.
Since August 2018, he has been admitted in hospital 5 times to treat bleeds. The latest report of him shows that his factor level is at 0% meaning that his condition is at a severe level.
His doctor have advised to start prophylaxis (regular dose of factor injection) ASAP. However factor availability is an extreme challenge. (since its not available from pharmacies like regular medicine).

Now every day is a battle, a battle with him for his survival. #lifeofhemophilic #hemophiliaday #17042019