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Hola mi nombre es Javier Ovalles, soy deficiente del factor lX, a mi hermano mayor lo dianosticaron con Hemofilia a su primer año, luego de 4 año naci yo, pero ya sabían que iba nacer con Hemofilia, yo y mi hermano fuimos objeto de bulin, pero gracias a Fahem conocimos más persona con el mismo trastorno y cada dias aprendimos más de nuestra deficiencia al principio fue muy fuerte pero luego fuimos conociendo de la hemofilia y aquí estamos viví siendo líderes de nuestras fundacion

My name is Courtney and I am 21years old, I am the only one out of my large family to carry on the gene for Haemophilia. I had my son when I was just 17years old and i myself had never been tested to see my percentage of been a carrier, when Cody was a day old he had a blood test and within a couple of days I got the news “your son has Haemophilia A”

Been so young at the time and not expecting this outcome at all I almost felt lost as there was no one else I could talk to in my family about how to deal with this.

BUT I did deal with it, with the help of online Haemophilia communities I learned so much about the condition. My son is now 4 years old, never needed factor 8 injections (so far) and soon the be a big brother! I am nervous to find out the gender of this baby but at the same time the advancements already made for blood clotting disorders is remarkable and I know my children will always be treated right x

Hey! My name is MayMay. I’m from China. My boyfriend has severe Hemophilia A. I convinced him to be on prophylaxis so we don’t need to worry about high risk of bleeding episodes. Now his ABR is significantly decreased. He started rehabilitation program last year and it improved his quality of life. I hope our life will get better in the future. We created a Wechat public account called “hemocat” and share information on hemophilia and other bleeding disorders. p.s. I love him (my “cat”) so much ❤

Mi nombre José Polanco, tengo Hemofilia A Severa, desde mi diagnóstico a los 6 meses de edad he tenido muchas batallas, vivir con esta condición en un país con baja inversión en salud es una lucha constante, la submedicacion es mi realidad así como cada Hemofílico Dominicano.

Los SANGRADOS y el DOLOR aunque contradictorio me han dado premios como Padres, Hermanos y Familiares maravillosos una Esposa mi apoyo día a día y amigos que dejan marcas en cada etapa de la vida pero también te premia con personas que compartimos un gen defectuoso llegando ser y sentirnos hermanos que luchamos y nos apoyamos mutuamente juntos a la Fundación de apoyo al Hemofílico FAHEM y los Doctores por el bienestar de todos.

#DiaMundialdelaHemofilia

April 17 is World Hemophilia Day. This disorder is near and dear to my heart. I’m not looking for pity but rather to educate on the impact it can have on a persons life and their family. It’s much more then just a cut that doesn’t stop bleeding. As far as we know, hemophilia started with my dad and he was severe. At a time when they knew very little about it. He spent a good portion of his short life in the hospital. He almost died twice by the age of twelve; suffered many joint bleeds leading to chronic stiffness, arthritis and pain. He died at 35 years of age like most haemophiliacs of that time, due to contaminated blood that he was given that was suppose to help him. For me, growing up as a child I knew I was a carrier of hemophilia and that one day might also have children effected by the disorder. In my early 20’s I was diagnosed with mild hemophilia. The bruises, the unexplained ankle injuries, the heavy menstural periods, the anemia all finally made sense. Hemophilia complicates a couples decision to have children, the labour and delivery process and in my life the way I raise my children. I was blessed with a daughter with mild hemophilia and a son with severe. We are lucky in Canada. To have access to free healthcare and treatment. Many countries do not, people suffer and some die. Hemophilia is very expensive to treat. I wouldn’t change anything in the world for my sweet kids but It means many many clinics appointments, surgeries, hospital stays, 3x weekly IV injections, increased anxiety and stress, safety protocols, stigma, the list goes on. As you can see It’s so much more then a cut that doesn’t stop bleeding.

I look forward to the month of April since discovery my first born’s hemophilia. He is the first of the family to have the condition. His diagnosis came about a year after his birth. We noticed he got black and blue marks quite easily. I was not really sure what hemophilia was when the word came out of the doctor’s mouth and although we were shocked to learn he had severe hemophilia (first tests indicate light), we were at ease once we were told that Brazil provided treatment through the national health system. Recently I was asked how it has changed our lives and my immediate answer was that it added an extra 20 minutes to our morning routine whenever we have to factor up. That is the honest truth, with treatment my 4-year-old leads a normal life, he plays, runs, skates, plays basketball, gets scrapes and bruises, black and blue marks, and busted lips, like any other child – in my phone I collect pictures of these remarkable moments. Last year we found out I was the mutated gene carrier and this year, exactly on April Fool’s my youngest (2 months) son also received his diagnosis of hemophilia type A. So, my husband and I are raising two very unique boys. In his words: to have children considered to be “normal” wouldn’t have suited us anyhow. I hope future and present parents will realize early on how important treatment is, and will adhere to it earlier rather than later – one should rejoice at the fact that prophylaxis, even if it comes through needle pokes. can offer children a more complete childhood.

Mi historia de la hemophilia en mi familia comienza en 1993 cuando.mi hijo nacio todo iba bien hasta que en Diciembre 22 del mismo año enfermo solo lloraba no sabia que tenia fuimos a la sala de emergencias y él dr que lo reviso dijo que tenia gases le recetó algo y regresamos a casa al día siguiente lo lleve con su pediatra porque no veia mejoramiento me dijobque debía llevarlo a la sala de emergencias porque pensaba que tenia merigintis nos aislaron. En un cuarto porque decian que era contagioso dañaron liquido de su espina dorsal no sabían porque salia con sangre y dijeron los doctores que ese liquido debió salir transparente ,por la mañana fueron a sacarle no se que paso cuando comenzó a sangrar mucho tuvieron que hacerle transfusión de sangre y plasma me explicaron que lo iban entubar porque su cabeza estaba creciendo le hicieron mray él resultado fue coagulo de sangre dijeron que debían operar venían doctores de diferentes hospitales a verlo me decian que mi niño talvez no sobreviviría para mi fue muy fuerte porque mi hijo solo tenia 4 meses de nacido una noche su dr que lo atendía en el hospital llamo a las enfermeras ordeno un examen se lo hicieron yo no supe para que hasta que el dr me dijo que me llevarían a sacar sangre para hacerme un examen y que por la mañana hablaría conmigo y mi esposo que talvez sabia que tenua mi hijo yo me aterre no sabia que pasaba por la mañana llegonel dr y con otros doctores nos sentamos en una mesa nos dijo que mi hijo tenia hemophilia y nos explicaron que era un transfornó sanguineo y como se heredaba de la mama a los hijos varones yo sali negativa no soy portadora gracias a Dios a mi hijo le pudieron deshacer el cuagulo de su cabeza no hubo neceisdad de operar le quitaron el ventilar para que respirara el solo todo iba marchando bien despues vino uN sangrado por dentro en toda la espalda quedo inmóvil tuvieron que darle terapia fisica porque perdio los movimientos cuando pensaban que ya todo iba bien le dio neumonía y volvieron a conectarlo al ventilador mi hijo paso ahí 3 meses en cuidado intensivo los doctores me decian que me preparara para lo peor yo puse a mi hijo en manos de Dios y fue un milagro que él sobreviviera ahora es un joven de 26 años y gracias a los grupos de apoyo y a la fundación hemos aprendido mucho sobre los trastornos de sangrados hemorragicos ahora yo ayudo en lo que puedo a las personas que desconocen este trastorno y comparto mi historia le shago saber que no están solo que habemos muchas personas para escucharlos todos somos una familia

I am a 38-year-old man with haemophilia B in Hong Kong. I was diagnosed since I was 3 month old. I started my secondary prophylaxis when I was about 15,regularly 2 dose per week for 40% level up after injection.

With the advance technology and medication, I believe the patient with haemophilia could dream and flies the dream out.

Hola Soy Isidro, 2da Generación en la familia. Vivir con hemofilia me ha hecho ser un luchador, conocer personar que al igual que yo luchamos día a día

Ten years ago I never imagined I would grow from a regular person with bleeding disorder into well-known global leader of bleeding disorders’ and rare diseases’ communities as I am today. Fighting for better treatment for bleeders in Latvia, helping friends around the world, constantly learning and overcoming myself, I count this as blessing rather than curse.
I was diagnosed with von Willebrand disease, one of many bleeding disorders, around 30 years ago, and there is just one more step to confirm my family’s and my diagnosis left. Unfortunately, not yet possible in my country. Lack of diagnosis and proper treatment influenced many of my life choices.
I am happy I can do my best to help other girls and women around the world live their best. I am sure it is worth it and the journey becomes shorter with every step we make.

I am the first hemophiliac double transplant recipient in the world. It’s pretty cool bragging rights if you ask me.

When I born I broke my moms tailbone, and I had a brain bleed. If I hadn’t stayed the night in the hospital for observation I wouldn’t of been here today. That’s when they discovered I had Hemophilia. That’s how my life got started. 😉 As a kid I spent a lot of time in and out of the hospital due to my hemophilia from the joint bleeds. My motto was and still is today: Hemophilia doesn’t define me. I define what Hemophilia is. I know my attitude is how I’ve gotten this far. Yes there were harder days, and I got discouraged sometimes, but I kept pushing. In 2004, I was diagnosed with Dilated Cardiomyopathy. I lived with a sick heart for 10 years. In order to be listed for a heart transplant, I lost 250 pounds. I received my gift of a “perfect new heart” on May 9, 2016 at Cedars-Sinai in Los Angeles. But even then, my fight was just beginning, and soon I waited again for a kidney transplant.

I went into kidney failure because of the induction meds post-heart transplant. I did nocturnal Hemodialysis 3X/week for 9 months. I still tried to enjoy life while on dialysis. It was hard, but I did what I could do. I began the search for a living kidney donor, which I found in September 2017 – she needed being my sister-in-law’s step sister-in-law… (Flow chart that one.) 😉

Thanks to my beautiful donor, Alicia, She shared her “spare” kidney me on October 31, 2017. I can know pee again thanks to her. She is my angel on earth. Now I’m more able to focus on spending time with my family and friends. I’m moving forward toward my dream of opening a heart-healthy food truck. And, as always, I continue to honor my donors by devoting myself towards volunteering in the Hemophilia community as well as Donate Life Northwest!

Buenas tardes,la hemofilia cambio mi vida con la llegada de mi hijo,la cual a sus 2 años fue diagnosticado con hemofilia A severa,desde entonces hemos tratado su condicion con responsabilidad,ya que al principio viajaba 2 veces ala semana asu profilaxis desde sanjuan de la maguana al robert reid,muchas veces sin dinero a tener que tomar prestado ,cansada pues el trayecto es muy largo y tenia que salir alas 4 am para llegar temprano pero gracias a dios mi hijo a llevado una vida equilibrada y todo eso es gracias ala fundacion,doctores,amigos y familiares#unidosporlahemofilia.
#fahem