Здравствуйте, уважаемые сотрудники WFH!
Узнав о том, что скоро будет Всемирный день гемофилии, решила написать вам благодарственное письмо. Вот уже более 50 лет вы сосредоточены на помощи и спасении больных. И сегодня, благодаря вашей деятельности, диагноз “гемофилия” перестал быть смертным приговором. Спасибо вам огромное за то, что посвятили этому свою жизнь!
Скоро христиане будут праздновать Пасху. Всем известно, что Иисус Христос воскрес из мёртвых. Однако, не все знают почему Он умер. На этот вопрос исчерпывающе отвечает Священное Писание: “Бог любит мир так сильно, что отдал своего единородного Сына, чтобы каждый, кто в него верит, не погиб, а обрёл вечную жизнь” (Евангелие Иоанна 3 глава, 16 стих). Из любви к людям Бог отдал своего дорогого Сына в жертву, а Иисус, в свою очередь, согласился принять мученическую смерть ради того, чтобы избавить человечество от греха и смерти, который мы унаследовали от первой человеческой пары. Грех можно сравнить с генетическим заболеванием, которое передаётся от родителей к детям. Христос, своей жертвенной смертью, открыл перед человечеством возможность жить без этого угнетающего “заболевания”. Вскоре послушные Богу люди смогут жить вечно, без боли, страданий и даже смерти.
Спасибо ещё раз за ваш ценный труд!
Желаю успехов в труде, и крепкого здоровья вам и вашим близким.
С уважением, Наталья.
As the editor of the WFH News page, I’m always covering the latest news in hemophilia, and sharing the latest developments for people with bleeding disorders. It’s a rewarding job, but the most interesting day of the year for me is World Hemophilia Day, because that’s when I get to read heartfelt stories shared by people from around the world. It’s really inspirational to read about your courage, and your strength! Keep it up. I look forward to hearing more from you, as I know the the other people in our community do.
Editor, WFH News
I am a severe hemophiliac with factor-VIII deficiency. I am from a remote island district of Bangladesh. I passed my early life without any treatment but to use ice available in fishing village near our village home. Yes I had a very critical life during my school life still I was able to complete my school education with good grades and able to get admission into Dhaka University, which actually changed my life’s goals. Then I got to be able to get in touch with WFH and Mr. Ashok Verma, the founder of HFI. He guided me to establish Hemophilia Society of Bangladesh.
And I have been working with HSB for last 28 years. It’s my pleasure to be a part of great transformation of HSB to new dimensions and the changing approach of government towards hemophiliacs is a great achievement of my life. We are now getting some factor support from government.
I am an avid solo traveler and enjoy my vacation days around the country, sometimes outside country. My physical disability cannot stop me to go around and enjoy my life. Yes I am fond of adventure traveling, whatever my body permits. I love my life, I love hemophilia, it infact strengthen my life.
Celebrating World Haemophilia Day 2022
If you have not seen or heard of heroine’s, here is one that inspires my work. Ba Egrain Ngandu from Kasamba village, Chief Hanjalika, Mazabuka District, Southern Province.
The woman you see in the two picture with her husband gave birth to 18 children of which 9 died because of haemophilia.
Trust their last son living with the condition is a clear testimony of how donated products by the World Federation of Hemophilia WHF have transformed the lives of the people living with haemophilia in Zambia.
I am greatly inspired.
Happy World Haemophilia Day to the bleeding disorders community around the Globe.
I have Severe Hemophilia A and have suffered from many complications from it. The continued support of organizations that help people suffering from this debilitating disease and all the help from supporting friends, family and colleagues has allowed me to live a relatively great life. Hoping the best for everyone who is suffering from Hemophilia. Goodluck!
I am a patient with HEMOPHILIA, I was diagnosed at the age of 10 months. Later I was found Sero Positive in 1996. I was the first patient of The Haemophilia Society Calcutta Chapter who started Anti Retroviral Therapy. This year my DIALYSIS HAS STARTED SINCE JANUARY 2022 as my kidney stopped to work. Again I am the first patient of the Haemophilia Society Calcutta Chapter who is on PERITONEAL DIALYSIS which is too expensive for me.
The H.T.C. of Calcutta Chapter has helped me a lot in my crisis period. I am thankful to the Haemophilia society Calcutta Chapter, Hemophilia Federation India, World Federation of Hemophilia.
I’m Syed Shabistan, a severe Hemophilia A from Peshawar, Pakistan.
I’m the part of spreading the WFH awareness campaign about bleeding disorders all over the globe & especially want to aware & facilitate my own community members of Hemophilia Patients Welfare Society Peshawar, Pakistan
اسمي رنا الصيفي وانا مسؤولة الشرق الاوسط في الاتحاد العالمي للهيموفيليا منذ عام ٢٠١٥.
الاحتفالات الرائعة باليوم العالمي للهيموفيليا في جميع أنحاء العالم وخاصة في منطقتنا العربية مدعاة للفخر والسرور معا. لدينا منظمات وأعضاء مجتمع افراد نزف ملتزمون بشدة، ومبدعون ونابضون بالحيوية في معظم دول الشرق الأوسط (آمل أن يجد أولئك الذين يكافحون مصدر إلهام للحاق بأقرانهم في اسرع وقت ممكن). إنكم تثبتون لنا يومًا بعد يوم ، مدي شجاعتكم وباسكم والتزامكم في الدفاع عن حق الجميع للحصول علي العلاج بشكل أفضل. أرق التحية وخالص الشكر النابع من صميم القلب لكافة مجهوداتكم اليوم وكل يوم. كل عام وانتم جميعا بخير. استمروا في التألق الأصدقاء والزملاء الأعزاء
My name is Tai-il Kim.
I have severe hemophilia A. And I have two sons and a youngest daughter. The daughter is 4 years old and of course a hemA carrier. I usually ask my children to help me when I self-inject to inform them about hemophilia in a friendly way.
Yesterday, I had a prophylaxis with my daughter. For the first time, she succeeded in stabbing the needle, even though I held her hand.
By the time our children grow up and give birth to their children, they’ll have completely overcome their hemophilia, and they won’t get these injections anymore, right?
Today, April 17th, World Hemophilia Day, I wish better treatment for hemophilia and better awareness of more bleeding disorders.
I have Von Willebrand’s disease. The diagnosis was made only 4 years ago. Now I am receiving preventive treatment. It’s scary to remember what happened before this treatment. This disease has severely undermined my health
My name is Atharv Pareek, I have Severe hemophilia A type disease, due to this disease I am not able to go to school properly nor play with friends, I have to go to the hospital 3 days a week to take the factor VIII. By taking the reason of the factor, my joints are still fine, I have thanks to the Government of Rajasthan and the World Haemophilia Federation, due to which I get these medicines free of cost. If such a medicine is made, which is to be given only once a week, then how much relief will it be for me?
Yes, my story is no difference between it and most of the stories of hemophilia patients at the beginning of my life and at the age of eight months, my mother discovered that I had hemophilia through blue spots on my body as well as bruises. Examination, diagnosis, and providing treatment for me was like a horror movie for my parents, as they knew the disease from before I was born and my son was dedicated to my safety. In my childhood there was a kind of follow-up and control in terms of what games and sports were allowed and not allowed. I was wondering at the beginning of my life why my mother not Do you promise to run and play with the rest of the kids? When I joined a school, it was normal for me, but for my family, it was stressful and tiring (knowing that I have siblings who are sick with the same disease). The aim of this is to make my identity known to all my colleagues, as well as the staff and school workers. I was very happy because everyone knew me and very sad because I could not play with my colleagues. The teacher did not leave me for fear and for my safety. I was very upset. I entered the department first and came out last. And the teacher held my hand until she handed me over to my mother or older sister in order to take me home in the evening at the end of work. I would secretly go outside to meet with my friends to play football, but they would not leave me or invite me because my mother and father had betrayed them from my playing football The foot is the reason that it causes me harm, so I begged them to play just a little bit, so they let me play and pass the ball to me and let me dribble and run without anyone in the way, then we think about football to play hide and seek and several traditional games and in the evening when I come home, my mother tells me no One day you will bleed and you will scold me and keep me at home so that I can go back to my lessons, and then the joint pain starts, especially the knees and ankles. I go to my mother and tell her that I am not okay, so she reprimands me and takes me to the hospital every time … a medical examination, a diagnosis, I take a dose of Factor 8 and go home And my parents are loaded with medicines and I have a needle implanted in my elbows… Relax and then resume playing electronic games and dominoes and read books and review the lessons that I missed under the supervision of my little teacher (my older sister) and my father. Especially at night and I was encouraging myself that nothing would happen to me and I would not repeat mistakes and I would study hard in order to excel and be the happiest of those who worked for me…. Mom and Dad always tell me that you are the reason for what happens to you and that you are a child you put yourself in trouble and Problems because you are not convinced that you are not like other children, my father talks and says that if you do this again, you will not go for a picnic, and I will not buy you what you want, and I will punish without hitting you, I will deprive you of all the things you want, so ask their forgiveness and I will not repeat this and I will I obey them and take care of myself knowing my mother is a nurse and she was always keen on my safety at home At school and outside, she alerts my friends and advises them about my safety. At home, my brothers gather and tell them to be careful of his safety in my absence, me and your father. Do not let him leave the house. Do not create problems with him. If he insists on leaving, call me or your father… .. Such are the sacrifices that parents make for the sake of their children …. I was a son who caused trouble and my daughter used to advise me and teach me the meaning of hemophilia patients and its types and what are its symptoms and dangers, and she encouraged me to practice swimming until I became proficient in it … She taught me how to inject Myself used to give me health education lessons, and my father used to take me daily to school in the morning and come back in the evening to take their advice. I realized it at the age of fifteen when I entered high school. Today, I am a young man, enjoying good health, and following my preventive treatment, thank God, knowing that my knee joints are very affected. Because of inflammation, but thank God I can move and help others, knowing that I am an association founder in my state and a contributor to providing a helping hand to hemophilia patients. Thank you