Today, allow me to go down memory lane and narrate about a condition that changed the trajectory of my life as a father- a caregiver.
I had been uninformed about Hemophilia until 2009 when I set foot at the doors of Kenyatta National Hospital where I got enlightened on Hemophilia. This was the day that not only proved most fruitful along the lines of seeking medication for a ‘disease’ (so we thought), that we didn’t have a clue about but also the day that I knew that my sons’ bleeding condition was neither a disease nor a curse but a manageable bleeding disorder.
Since 2004 when my third-born son (Now 20yr old) started showing symptoms such as swelling of joints and rampant nosebleeds life hasn’t been quite as usual. The case doubled in the year 2005 (Now 18yr old) when we were blessed with another child who was hemophilic. Frequent visits to and from the hospital started becoming a norm to the extent of absurdity let alone the constant fear of my two sons losing their lives to Hemophilia. (Both of them have Hemophilia A)
Because the two hemophilic kids had to constantly play regardless of their being vulnerable to bleeds, most of the time they came back home either bleeding or with swellings. This meant that their siblings, mother, and I, had to find ways to stop the bleeding or suppress the swelling which at times translated to less sleep or no sleep at all.
Back then, factor was something unheard of and the use of crude ways to stop the bleeds seemed to even worsen the symptoms. I remember even rubbing a hot wet towel around a swelling with the intention to reduce it. Little did we know that we were making it worse instead.
Compounding the reality that a lot more ground on Hemophilia in Kenya had not been uncovered, many cultural norms and practices added insult to the injury we already had. The never-ending prejudices from neighbors and the community that insisted on primitive courses of action pushed us as a family to the edge. Some even went to the lengths of terming us as a cursed family.
This notwithstanding, we trudged on as a family nursing our hemophilic sons and siblings. However, we had to live with the truth that whenever one of them got injured they had to pause their education and stay at home until the day they recovered. Such a case came in the year 2008 when Allan- the second hemophilia son had to stay at home attending to his swollen knee for a whole year without access to education or proper treatment.
Fast forward to the present times, tables have turned and life has become even more bearable, to say the least. Thanks to easy access to medicine, hospitals, and even a community of hemophilic families that can lend a shoulder to lean on. With organizations such as the Kenya Hemophilia Association and the World Federation of Hemophilia coming to our rescue, we rest assured that the provision of factor products will always be within our reach.
Today, it is safe to say that periodic hospital visits, hefty costs of transport, and missing school just because of a minor bleed are now something of the past. This is because home-based treatment is now common as the two hemophilic kids can administer their prophylaxis treatment even without the help of a doctor. This has cut a lot of costs such as maintenance and transport costs which certainly had an impact on our living standards as a family.
That we are headed for promising times in the near future is clear from the decibels of modern technological advancements, medical development, and a great deal of financial support alongside the availing of medical infrastructure concerning Hemophilia. Yet, despite these advancements, some underlying concerns can be taken into account for a better tomorrow.
A good start would be training other affected members of the family on how to handle their hemophilic siblings such as administering prophylaxis, how to handle bleeds and even ways of treating nosebleeds. These can be made through online training and education amongst other channels.
Along awareness lines, in my view, the hemophiliacs themselves besides their siblings can be a conduit for mass awareness of hemophilia and its effects. This is because they are the ones affected firsthand. Armed with the knowledge they have acquired over the years; they stand a chance to be upfront in the battle of ending deaths accruing from this bleeding disorder. Perhaps this is the surest way to bridge the gap between the already known and unknown hemophilic in the whole world. Who knows?
Furthermore, the provision of guidance and counseling to the affected family members will also go a long way in the reduction of depression caused by constant witnessing of the agony that hemophiliacs go through. To be frank, as a father, I have seen the effects of agony spread all over the family members whenever one of the hemophilic kids gets injured or gets hospitalized.
Moreover, with the utilization and availability of technological instruments such as laptops and smartphones, families can now be virtually assisted whenever an injury occurs without necessarily visiting the hospital.
In retrospect, comparing how life is now with long before we got enlightened, I consider it a blessing to have known the bleeding disorder at the opportune moment. Life now is snug and above all, knowing that my two hemophilic sons are going to readily access treatment gives me a sense of serenity. Many thanks go to all organizations and friends that stood by our family in combatting hemophilia and its effects. Surely, the synergy that has been in play has borne fruit in the long run!
My name is Dennis Rutto, I have severe hemophilia A. I was diagnosed with the condition in the year 2012 after I had undergone circumcision. Early diagnosis was missed due to a lack of knowledge among my parents and the community at large. Having the kind of health issues I had was considered a curse, which resulted in a lot of stigmatization, disability in major joints due to lack of proper treatment, and seclusion. Since my diagnosis, I have been receiving factor infusions only on demand as we do not have enough factor supply for prophylaxis as a country, and through this, I have seen a drastic change in my bleeding episodes, reduced pain and suffering, and a dramatic drop in the number of times I have needed hospitalizations. Overall, my quality of life changed for the better allowing me to be an independent young man with a Diploma in Health Records and Information Technology working with the Ministry of Health. My prayers and wishes are that the government and other partners work together to provide access to essential hemophilia treatment products in the country to support both on-demand and prophylaxis in line with enhancing universal coverage and treatment for all.
“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.
Hello all,
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.
Mitch
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.
https://youtu.be/HLnTYmFc-aM
Pour toute question, veuillez contacter marcomm@wfh.org.
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