“Being a hemophilic is just a matter of adopting a diverse lifestyle that is more protective and safe”
Growing up in a developing country with Hemophilia meant more than discomfort, pain, and disability to me. I remember the times spent lonely at home, away from friends. At times, friends were reluctant to include me in games due to the fear of the disease that I would end up with an injury or a severe bleed. During childhood, my playtime was well guarded, excluding me from all school/extracurricular activities. I felt deprived of my entire childhood and it gave me an inferiority complex. Growing up as a teenager was not easy either.
The social stigma that surrounds Hemophilia has adverse effects not only on the patients but also on their relationships with family, friends, and colleagues. As the disease progresses, It can cause a condition of caregiver burnout for the family members, and they may also be affected by the stigma often attached to the disease. I was diagnosed at the age of 14 months with hemophilia “A” [severe factor VIII deficiency]. In the early 1980s, there was nothing much to treat my condition except FFPs [fresh frozen plasma] in Pakistan. Because of knee damage, I needed a leg brace by the age of ten and depended on crutches and a wheelchair at different times. I give my parents great credit for teaching me that life is manageable and I was never allowed to feel sorry for myself. I’m so blessed to have a caring wife and a lovely daughter.
Later at the age of 12, I was tested and got positive reports of co-infections. My physician and my father decided not to disclose the results of the test. I was quite young to digest the details. At the age of 22, upon knowing my status of co-infection, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. My friends started avoiding me and my workmates preferred not to interact frequently. I visualized several things to suppress the reality until finally I surrendered myself to Allah. First question that came to my mind was “WHY ME?” Then I looked for answers; “Allah only burdens those capable of bearing the burden”. I have gone through many trials and surely there is a reason…Allah tested me. Then I read a verse from the Holy Quran; trials given to people are commensurate to the courage they have. Rather than being sad, I felt proud. Living with a chronic disease along with Hemophilia teaches you how to persevere and cope with adversity.
Having transcended my fears, with the belief that the future lies in Allah’s hands, I live each day positively and with the courage to face the uncertainties and complications sourced by Hemophilia and my co-infection. I have seen life as not as simple as others have; the challenges I faced have given me the resolve to not only help myself but also others. In my teenage; I decided to volunteer for the hemophilia cause by joining the local Hemophilia Society in 1998. I’m currently serving Hemophilia Foundation-Pakistan [HFP], as a “Community Advisor”. In my previous role, I served for eight years as President of PHPWS and represented Pakistan on many national, regional, and international platforms. As a patient activist; I have been advocating to achieve treatment for all those living with bleeding disorders. I strongly believe in the greater involvement of Hemophiliacs at all decision-making levels. After doing my Master’s degree in Business Administration [MBA]; I got an opportunity to work for United Nations. I believe education and determination to face the reality can lead hemophiliacs to a healthier and more successful life.
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?