I am Muhammad Gunarso, a 51-year-old Hemophilia B patient. I am the first diagnosed Hemophilia B patient in Indonesia, thanks to the assistance of the late Prof Djajadiman Gatot, MD. Since Indonesia joined the World Federation of Hemophilia, many changes have occurred in our country. Treatment, care, and government support for us have gradually improved. This is not without the hard work of the medical team at the Indonesian Hemophilia Society, who continuously advocate for hemophilia treatment in Indonesia. I also express profound gratitude to the WFH for their unwavering support through their Humanitarian Aid, which is always available and responsive when we need donated medication.
Hola soy Thomas Ceballos, tengo 15 años de edad y actualmente estoy culminando mi bachillerato, me diagnosticaron como paciente con Hemofilia A severa cuando tenia 8 meses de edad por un sangrado en la cabeza, desde ese momento mi mamá Luz Estella me ha acompañado en todo el proceso de salud, llevo mi vida común y corriente realizando diversas actividades con el debido cuidado.
Una de las anecdotas que mas recuerdo es cuando estaba más pequeño y me rode por las escaleras de mi hogar, el diagnostico fue sangrado en la cabeza más especificamente en el craneo, producto de esto estuve hospitalizado en el hospital fundación San Vicente de Paul en la ciudad de Medellín por dos meses, luego de esto pude continuar mi vida pero con más precauciones y cuidados.
Debido al accidente que tuve mi madre me afilio a una fundación sin animo de lucro llamada Liga Antioqueña de Hemofilicos, esta fundación tiene varios proyectos y programas en los cuales me he vinculado, así como he compartido con otras personas con diferentes coagulopatias, desde ahí mi familia y yo obtuvimos más información acerca de la enfermedad, hemos participado en diferentes actividades convirtiendonos en miembros activos de la fundación.
Lo que más me gusta de la Liga es poder compartir diferentes historias y anecdotas con los demás afiliados, adicional me gusta poder empoderarme de mi condición para instruir a las demás personas que quizás no conocen la enfermedad.
Saludos desde Colombia.
I am Yazan from Palestine, diagnosed with Hemophilia type A shortly after my birth at the age of four months, during a circumcision procedure, where bleeding persisted for hours, prompting the doctor to conduct a clotting factors examination, revealing a deficiency in one of the blood clotting factors, diagnosing me with Hemophilia A. This was surprising to my family and doctors alike, as there was no prior history of the condition in my family.
Since then, I have been living with Hemophilia, recalling my school days when I used to play football frequently, often leading to frequent bleeding in joints and muscles. I would experience muscle and joint bleeds at least once a week during that time. Treatment was frequently interrupted, sometimes requiring blood and plasma transfusions by doctors.
This suffering continued until I turned 18, when I realized that prevention is the best solution for living with Hemophilia. I stopped engaging in sports activities that could lead to bleeding and became fully convinced that Hemophilia is a manageable condition if we live our lives properly, away from strenuous activities that stress muscles and joints.
Certainly, there are times when injuries occur that can be managed, but since then, I have continued with preventive treatment, receiving it approximately twice a month. I have also learned to administer the treatment and injections myself at home, according to hospital policies regarding medication administration.
Despite this, we in Palestine are very concerned about the discontinuation of clotting factors and their unavailability in the correct and required form.
I now lead a normal life in all aspects, psychologically, socially, and physically, without any problems. I look forward to meeting fellow Hemophilia patients, so I will leave my email address and would be happy to connect.
yznaymn51@gmail.com
Hola mi nombre es Patricia naranjo soy mamá de Diego Blankevoort el cual tiene hemofilia A severa .soy portadora de hemofilia mi padre tenía está enfermedad vivimos en San Antonio chile y Diego lleva usando su profilaxis desde que tiene 1 añito de vida hoy tiene 7 años y para mí su tratamiento a Sido de gran ayuda cuando era más pequeño sufrió caídas fuertes y moretones feos yo partía con el algún lugar donde me lo puedan pinchar inyectar el sufría mucho a veces le encontraban sus venas y aveces. Quedaba peor con su manito .
Hasta que llegamos al Hospital Roberto del Río dónde nos resivio la doctora Verónica Soto y su equipo ahí me enseñaron inyectar a Diego y hoy en día estamos muy felices de poder ayudarlo yo y todo salga bien .
El se inyecta días alternados osea un día un día no .le a echo su vida súper normal y no hay tanto sangrado .
Estoy feliz de que la hemofilia en chile cresca y tenga acceso a todos .
Ya que en años atrás más remotos mi padre quien falleció necesito mucho tener el liofilizado pero en eso años era imposible hoy en día gracias a los médicos tenemos un tratamiento gracias a los que hacen posible que todos tengan tratamiento
Hello Everyone & WHF Team …
President Mr. Mr. Cesar Alejandro Grarido D – Sir ..
I am Bommaiah.S PWH (or – Hemoman). I was born on October 20, 1989, in Dindigul district, Tamil Nadu state, India. I am diagnosed with hemophilia B factor IX 9 deficiency (less than 1 ℅), a lower social and economic group, and very middle-class people in my life. My father and mother are uneducated people, I am the 1st Graduated of my Family , My parents are working in a handloom weaver job, and My family is the smallest: my father, mother, younger brother, and my hemophilia disorder(5th) , a total of 5 members, and a very happy family.
I have a lot of problems in my life, and each problem has a significant impact on my money. During my childhood, I was admitted to (India) Madurai Rajivu Gandhi Government Hospital in 1990. At the Time Hemophilia Treatment only GH Side plasma (FFP) and a few times fresh blood. I experienced a more painful life in Govt Hospitals . Doctors and healthcare workers were less aware of Hemophilia disorders in the 1990s, making treatment more painful. ,The GH hospital atmosphere is not clean. A place without cleanliness and hygiene essay
In my childhood Days’s doctors told me you are a very special human boy; you are the only hemophilia patient boy in this hospital ward . My mind was fixed. I am a different human. I have watched more cartoons in my childhood. I am imaging Superman and Spider-Man. The characters listed above added to me. it’s Called Hemoman .. !
Hemo Man is just a funny comedy in this current time, but Hemo Man was very strong and had more willpower to face any problem step by step in life. Up until now, the Heoman was not a single person; each and every Hemophilic person is Hemoman’s.
I have completed my M.com. in Banking and am still working in the Pvt. Concers Accounts Department. Lowest Salary Basic: This is dependent on the ESI (Central Government Insurance Scheme in India). Medical Benefit: ESI Hemophilia Factor IX Medicines Proflex Treatment Purpose is working. For the past 8 years in Using Factor IX (9) , the past 2 years in Indian Countries Side Factors are very demanded, and Indian Govt new acts are posted made in Indian Protect only approved in Govt ESI Hospital and GH Side (Forgine Medicine is not allowed in GH & ESI Hospital side). Indian New Medicine is, quality-wise, the very worst medicine provided to me. My health disability has decreased, and I am fighting more on the ESI government side; finally, I failed.
India has the world’s largest human population, so hemophilia patients no longer receive special benefits from both the state and central governments. No education benefits, particularly scholarships & medical insurance companies, are available for hemophilia disorder because, cost-wise, no insurance company supports hemophilia patients.
Indian government-sector jobs have no special quota. Private jobs are not accepted more because we are unfit, healthy, have no jobs, and have no proper income in this life, so more financial problems are faced, including this problem to this date. The main and most important aspect of our lives is the life-saving factor. Supply medicine, demant; kindly save our people
My Major Request: The Hemophilia Affected My blood brother is facing this kind of major problem. Any NGO, kindly Educational support & good job opportunities for our blood brother and help me..
My Coimbatore & Madurai Hemophilia Chapters and HFI Team (Hemophilia Federation India) are both more supportive of the situation I am living in now and more helpful to me.
My ambition was to serve Hemophilia people and save their lives. If there are any service opportunities, please inform me. I am willing to serve out my brother’s blood.
Thanks so much, everyone!
Thanks & Regards,
S. Bommaiah
Mail Id : bommaiahsbk@gmail.com
country : India _ Tamilnadu State
My Twitter ID : @Hemoman_SBK
Note :
This is my 1st Stories form. I am full fledged not English knowledge person I am only Google Translated help to sentence making this letter if any wrong In writing, sorry for the inconvenience.
Hola, mi nombre es Solange y soy mamá de Chris, un niño con Hemofilia B severa sin antecedentes familiares. Se la diagnosticaron al año de vida luego de llevarlo en reiteradas ocasiones a distintos doctores, ya que se le hacían moretones de la nada. Fue un golpe duro para nosotros como padres ya que desconocíamos por completo ésta condición y tuvimos que ir aprendiendo junto con mi hijo todo lo que conlleva. Verlo sufrir con las inyecciones fue lo más duro porque para las enfermeras era muy difícil encontrar sus pequeñas venitas, pero era necesario hacerlo para mantenerlo protegido. Con el paso de los años hemos aprendido mucho sobre la hemofilia, aunque en Chile es difícil ya que es una condición muy poco conocida y muchos profesionales de la salud incluso la desconocen, hemos podido resolver dudas e inquietudes con la SOCHEM, quienes siempre están al pendiente de todos los pacientes y familiares de los hemofilicos. De a poco mi Chris está entendiendo lo que es el inyectarse y porqué tiene que hacerlo, siempre dice que es un valiente y agradecemos al cielo que todo ande bien. Ya estamos en la etapa escolar y ha Sido un poco compleja por la falta de información que hay en los colegios con respecto a esta condición y los cuidados que requiere, pero hemos podido explicar de la mejor manera para que padres y compañeros de curso entiendan que Chris no puede golpearse fuerte.
Chris también ha Sido diagnosticado con TDAH (trastorno por déficit de atención e hiperactividad) por lo que es doble trabajo el cuidado, ya que todos los días tiene mucha energía y no mide riesgo en relación a su condición, pero como padres tratamos de cuidarlo y de enseñarle lo que mas podemos.
Espero como madre que la sociedad conozca más sobre esta condición y puedan salir nuevos avances en la medicina.
Un gran saludo y abrazo a todos los pacientes con Hemofilia este 17 de Abril ☺️💖
I would like to share with everyone about my Son’s Hemophilia Journey.
My son was diagnosed with Severe Hemophilia-A when he was seven months old. Unaware that all this time, he inherited the genetic disorder that runs through our blood. Not knowing that I am a carrier. Before we have him tested, symptoms showed already like easily bruising, prolonged bleeding on vaccinated area, and swollen vaccinated area after.
As a first time mom, it is very hard for me as he is our first baby. Once we learned what he have, We scheduled a check up to a pediatric hematologist, took all the precaution and advices given by the doctor in case we find bleeding on sensitive areas like joints and gums. And what is the current medication given to a hemophilia patient. We also registered him as a patient with hemophilia here in the Philippines in HAPLOS, which supports the patients with different types of bleeding and to have an idea on how to have an access to medications.
Given that Hemophilia is not known in our country, it is really hard to look for a hospital who has an idea with this disease. We have to go to the city when he needs to infuse and be checked by doctors. And another one is that, in our country, we only do infusion when bleeding is present especially in joints and bleeding areas. Unlike in other countries, they normalize infusion at least twice or thrice a week.
His first infusion happened last July 2023. His joint was swollen and needs to be treated immediately to stop the bleeding. Afterwards, the next bleeding recurred last November and December 2023 due to swollen feet both left and right. And the most recent was January 2024 of this year. We thought that he was coughing blood due to his allergy, but then we realized that it was coming from his gums. We went to the ER to help us with infusion, as we do not know yet on how to insert the IV, we asked for assistance from the resident doctors to help us with our concern.
Right after that, he had his follow up check up with his pediatric hematologist, and was prescribed with tranexamic acid, a medicine which can help our son stop from bleeding especially on gum area.
Currently, our son did not show any signs of bleeding, and as much as possible, we do all the necessary things like first aiding in order to prevent our son from bleeding. Knowing that he was a severe patient and no regular infusion in our country yet, we do what we can do in order to prevent him from bleeding.
Hola.. soy portadora de Hemofilia A. Me lo detectaron a los 14 años. Tuve complicaciones cuando era adolescente, sangrado excesivo cuando me extraían una pieza dental. Actuañmente, tengo una vida normal, tuve dos hijos una niña y un niño. Ambos gracias a la vida, no padecen de la enfermedad. Soy la única de mi familia que es portadora.
Soy portadora de hemofilia A, mis hijos varones ambos tienen deficiencia de factor VIII de coagulación (Hemofilia A) el más pequeño tuvo una herida en su mano y estuvo sangrando por semanas hasta desarrollar un pseudoaneurisma el cual reventó y tuvo una hemorragia considerable. El hijo mayor era deportista de alto rendimiento y tuvo una lesión en columna lumbar secundaria a traumatismo y hemorragia, tardaron casi dos años para el diagnóstico y bueno, dejó de jugar. Yo soy hija de padre hemofilico pero desconocía de él por tanto también desconocía de nuestra condición. Curiosamente mi padre falleció hace dos meses posterior a extracción de un molar y hemorragia (misma situación ya había vivido con mi hijo).
Los odontólogos y los profesionales de la salud deben tomar en cuenta esta enfermedad pues minimizan el cuadro clínico sobre todo cuando es una hemofilia A leve.
Hola soy Francisco, tengo 12 años vivo en la ciudad de La Serena, Chile. Fui diagnosticado con Hemofilia A cuando tenia 1 año al poco tiempo tenia inibidores. Tuve la oportunidad de realizar inmunotolerancia durante muchod años hoy realizo mi vida con normalidad realizo todo tipo deportes sin epidosios de sangrado. Agradezco a mi familia y al centro de hemofilia de mi pais por todos los cuidados para poder realizar una vida completamente normal.
Maryam Waleed Mahdi
Mother of a Son with Hemophilia
Iraqi Hemophilia Society
On September 4, 2018, our lives lit up with the arrival of our firstborn, Sam. His laughter filled our home with joy, revealing new shades of happiness each day. At just 10 months old, Sam embarked on his journey of exploration, crawling, and attempting those wobbly first steps with the support of the couches. Little did we know that a momentary stumble would alter the course of our lives.
It began innocently enough—a fall, a seemingly minor incident that unfolded into a perplexing ordeal. Sam’s tongue began to bleed, and as concerned parents, we assumed it was a typical baby mishap that would soon heal. However, the bleeding persisted, transforming mundane nights into heart-wrenching experiences. Waking up to find your son sleeping in a pool of blood is an image that still haunts me.
After a prolonged and challenging journey to attain a diagnosis, the truth was revealed: Sam had severe hemophilia A. The diagnosis cast a shadow over the once-colorful life we envisioned for him, turning it into a grayscale existence defined by a bleeding disorder and a chronic disease. The weight of this revelation was heavy, but we chose not to succumb to despair.
In the face of adversity, we developed a plan, a roadmap for Sam’s safety and well-being. Our home was transformed, with floors padded and cushioned to create a Sam-friendly environment. We became vigilant guardians of his every move, ensuring that crawling and walking posed no threat of injury or internal bleeds. Sam, adorned with a cushioned helmet during park outings, was shielded from potential head traumas.
Commitment to Sam’s health became our daily mantra. Weekly prophylactic doses of factor 8 were administered, each injection a testament to our dedication. Sam’s resilience shone through despite the challenges of finding suitable veins for the injections. His hopeful smile, a beacon of strength and determination, reassured us in our darkest moments.
As a mother, I began searching for communities interested in hemophilia to educate me and my family about how to live with it. The doctors recommended I join the Iraqi Hemophilia Society, where I met mothers who are also fighters like me. This connection with other families facing similar challenges provided invaluable support and understanding. Together, we shared experiences, exchanged knowledge, and offered each other comfort on this journey.
Gradually, things started to improve for my family, especially when a new medication became available in my country. The introduction of subcutaneous injections marked a significant turning point, making the treatment process easier for Sam and reducing the associated pain. This advancement not only enhanced the quality of Sam’s life but also brought a sense of relief and hope to our family.
Navigating life with a child with hemophilia is an ongoing learning experience, but being part of a supportive community has made all the difference. We’ve learned to celebrate small victories, cherish resilient smiles, and find strength in unity. As we embrace the advancements in medical care and share our collective wisdom, we continue to move forward with courage and optimism.
Together, we prove that even in the face of hemophilia, there is a path to a fulfilling and joyful life. Now, at the age of five, Sam not only rides a bike but lives as normal a life as possible for a child with hemophilia. I often remind him that his condition doesn’t make him less; rather, it highlights his extraordinary ability to navigate life with grace and resilience—a true superhero.
To all the mothers out there facing the challenges of hemophilia, know that you are not alone. Your strength is commendable, and I am proud to stand beside you. Together, we celebrate our children’s resilience and the hope that comes with each new day, proving that life can be lived with courage and joy even in the face of hemophilia.
Happy World Hemophilia Day!
JOURNEY WITH HEMOPHILIA
I am T. Jaipal, 73 years old ,Member and Treasurer of Hemophilia society Pondicherry chapter. My journey remained from South to North and North to South .
I was born on 6thOctober 1950 at Chennai. My father being central government staff got transferred to Jabalpur and we got settled there. Up to 12 years of my age days passed with full of pain and treated with Home remedies. There was a small Rt knee hit and from then onwards spontaneous bleeding occurred with a big swelling and intolerable pain. In spite of pain killer medicine taken, Rt, Knee got totally stiff and then onwards RT Knee had contracture. Then many episodes of joint and muscle bleed occurred, and I started my career along with the pain and Courage given by God .
I completed my HSSC examination and joined Central Government as LDC Staff. From then onwards I reached up to Office Superintendent Level -1, in Administration Division, in no time I became handicapped due to repeated joint and muscle bleed
Things were going normal and one fine morning spontaneous Gum bleeding occurred and it took 3 to 4 days to become normal. In the year 2004, September Intra Abdominal bleed occurred and not able to find reason and 10bottles of wholesome blood given to stop the bleeding. I again consulted with the Dr’s and again Medical checkups was done thoroughly and found that it is blood clotting disorder Hemophilia. Blood Assay was done and found F VIII < 1% which is severe. Then I got Registered in Hemophilia society Jabalpur as a member.
In the month of April 2006 I got Voluntary Retirement leaving 5 years service. I had an opportunity to settle in Pondicherry along with my son and my wife. Since 2011, we settled in Pondicherry. I called Mr. A. Balaji, secretary of Hemophilia society Pondicherry chapter,and he advised me to contact Dr. P. Nalini, and get registered in Hemophilia society Pondicherry chapter. Then Dr. P.Nalini called me over phone to come to office immediately and she examined all the medical records and told to get registered in the Pondicherry chapter. She felt very sad due to disability happened to me
From then onwards Dr. P. Nalini is fully taking care of me. She with the help JIPMER Central Government Health Scheme, received Factor VIII for me as regular prophylaxis. It would not be out of order to say that Prof. Dr. P. Nalini is GOD for Hemophiliacs of Pondicherry chapter providing personnel touch to all hemophiliacs irrespect of caste, creed and colour. This year 2023 Prof. Dr. P. Nalini is awarded with Padma Shri by the Government of India.
I am living peaceful life with the help of Hemophilia society Pondicherry chapter,
JIPMER Doctors, Central Government Health Scheme, and along with my family support also.
Thanking you,
Treasurer and Member
Hemophilia society Pondicherry chapter
If you have any questions, please contact marcomm@wfh.org.