My name is Ariel Yonatan Alin, I am 27 years old. I come from Surakarta, Central Java, Indonesia.
I am an individual with hemophilia A. I was detected with hemophilia when I was 6 years old, at that time I went to Sarjito Hospital Yogyakarta for treatment.
My experience dealing with hemophilia is very complex, because no one in my extended family suffers from hemophilia apart from me.
And I have overprotective parents.
The hardest experience was when I was little, I could only see my friends playing football.
Until I was an adult, I still regularly underwent treatment at the hospital, I was injected with factor 8 approximately once a week.
Currently I have completed my master’s degree in informatics, and hope to become a lecturer.
I hope that hemophilia treatment through genetic therapy can soon be implemented throughout the world, and at a much more affordable price.
#WHD #worldhemophiliaday #world #hemophilia #day #for #better #treatment
Hola, mi nombre es Lilly Villalon, soy de nacionalidad Mexicana y resido en Estados Unidos. Fui diagnosticada hace 2 años con Hemofilia A mild y VWD Type 2N, tengo un hijo de 17 años diagnosticado con Hemophilia A mild, y tengo 3 hijas que están en proceso de ADN 🧬 para checar si también tienen hemophilia.
Mi nombre es… Mateo naci en la ciudad de Trinidad, Beni-Bolivia, un 12 de abril del 2018, y actualmente vivo en San Ignacio de Moxos, una provincia del Beni.
Mi historia comenzó en San Ignacio de Moxos, en el mes de octubre del 2018, cuando tenia 6 meses de nacido.
La primera vez fue cuando un dia amaneci con un morete bajos mis axilas, mis padres pensaron que me habia lastimado con mi andador, la segunda vez me volvio aparecer otro morete en lado derecho de mi pecho, mis padres se empesaron a preocupar, por que ya no era nada normal, no entendia por que me salian los moretes, pensando que por accidente alguien de la familia me habria apretado muy fuerte, mi mama se preocupo mucho y me llevo con un medico particular, para saber el motivo por el cual me salian esos moretones, el doctor me reviso y le pregunto a mi mamá que si alguien me habia apretado o me habia alsado mal, hasta incluso penso que mis padres m golpeaban, a lo que mi madre respondio que no, que solo el morete habia aparecido de un momento a otro.
Entonces el doctor pidio unos analisis de laboratio, donde mi cuagulacion salio alterada, y pues nos envio a trinidad para una consullta con un pediatra, y el pediatra me reviso y llego a un diagnostico presuntivo de Hemofilia y como en trinidad no contamos con hematologo decidio enviarnos a la cuidad de Santa Cruz donde si cuentan hematologo, bueno despues de una consulta y varios estudios, m diagnosticaron con Hemofilia tipo b severa.
Una noticia muy impactante para mis padres, pero increiblemente tomaron con mucha calma la noticia, porque mi madre dijo que era una prueba que Dios puso en nuestras vidas, y confia en que nosotros podremos con la prueba siempre de la mano de Dios. Es una manera muy admirable de tomar la noticia,despues de tomarle la mano a mi padre y orar dandole las gracias a Dios por la vida, luego vi que mis padres lloraron cuando decidieron contar la noticia al resto de la familia, luego desde ese moemnto empezo mi vida con hemofilia, ahora tengo 6 añitos, y soy un niño bemdecido porque recibo tratamiento profilactico de fector IX, una gota de amor, vivo mi vida normal, no tengo problemas articulares, voy a la escuela y estoy en primero de primaria.
Realmente soy bendecido Dios cuida de mi, gracias a el estoy bien, y tengo una buena calidad de vida, dice mi madre que si yo me pongo a orar con el corazon y pido por mi sanidad, Dios me sanara, y sere un niño sano libre de Hemofilia.
My name is Novi Riandini, 50 years old. I am married to Muhammad Gunarso, who has Hemophilia B since 1998. At the beginning of our marriage, I encountered many difficulties finding information about Hemophilia. There were many things I didn’t know about how to care for a husband with hemophilia with limited treatment and medication options at that time.
Eventually, using my experience in Public Relations, I reached out to several doctors and parents of patients to establish a hemophilia community in Indonesia. Alhamdulillah, in the first 5 years, there was an increase in the number of diagnosed Hemophilia patients in Indonesia thanks to the media campaigns we conducted. Initially, only 98 people with hemophilia were recorded as diagnosed, but this year we have recorded almost 3000 hemophilia patients across Indonesia. We did a lot to educate the public, from holding seminars/trainings for medical professionals and the general public, sharing stories in print and electronic media, and many other PR campaigns.
The improvement in treatment and medication availability has also increased, balanced by government support through our national health insurance called BPJS.
Thank you, World Federation of Hemophilia and Indonesian Hemophilia Society.
Happy World Hemophilia Day, everyone.
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.
Pour toute question, veuillez contacter marcomm@wfh.org.
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