My name is Mohammed Soliman and I am from Egypt, I am blessed with severe hemophilia A. Being a hemophilic patient, one of three hemophilia heros in my familly, I have gone through a lot of difficult times specially when it comes to deal with hemophilia in a developing country where there is a lack of proper treatment.

Despite all difficulties I managed to finish my B. A. In Education and I work as a teacher in Ministry of Education till now.

I have been volunteering with the Egyptian hemophilia society and working actively in my province Dakahlia which is located in the northern Egypt near the Mediterranean Sea. I managed to advocate for hemophilia in health care facilities, helding meetings with stakeholders in my province and patients to advice them with what I have learned. I encourage new patients to get tested and registered by the Egyptian hemophilia society national registry.

My only hope is providing proper treatment for all hemo heroes all over the world.
Peace & love

Then and Now of a Hemophilic

While living with Hemophilia-A severe is a full time contest and this was become more case-harden when someone like me lives in a remote and under-develop area of North West Pakistan. I opened my eyes when conditions were not favorable, means, no treatment availability for cure and unknowingness about Hemophilia. My mental growth and progress rendered during my childhood period. Life was almost a burden.

When I and my family came to know about this mysterious disorder, then I was kept restrict from certain activities like that of traditional sports in my Village. I was bitterly treated in my school as having the most absent student from school. This put further pressure on me. But the most tragic was the death of my father who was the lone supporter of our family. Also I was the eldest among the sibling. Now rescheduling life as a responsible person to treat myself and family was got more difficult.

The year 2015 was a game changer for me when for the first time I participated in a World Hemophilia Day event arranged by Hemophilia Patients Welfare Society – Peshawar Chapter. There I met with people who all have suffered with Hemophilia in one or other way. I took a breath of satisfaction when I heard almost same stories and like mindedness. I decided to shift to Peshawar city because of the availability of good quality treatment from Hemophilia Foundation – Pakistan [HFP] & World Federation of Hemophilia [WFH]. It brought more comfort when I was selected as Executive Board Member of Peshawar Chapter. I took upon the responsibility as a volunteer and sooner I used to take part in different local and national activities. Looking to my hard work and thirst to discover Hemophilia more, I was nominated as member of National Executive Council of HFP through voting. This brought more courage and enthusiasm that I can proceed in a much better way.

To diagnose and treat Hemophilia or related bleeding disorders, the management from government sector is too much necessary. The government should loop persons with hemophilia, their family and medical experts so that there may be easiness for patients. Early education & parents guidance is vital in developmental stages. Volunteerism is the best role player where besides oneself, others may be benefited. Also communities like that of Hemophilia has exceptional role to develop a skillful life.

Soy Francisco González
Mí historia inicia desde el año y 8 meses de edad, cuando fuí diagnosticado con Hemofilia A Leve, sin antecedentes de Hemofilia por parte de la familia de mi padre ni de mi madre, después de haber tenido complicaciones para detener un sangrado en la boca.
#HemoHacksMx

Si estás viviendo con este trastorno, es algo de lo que estar orgulloso, no avergonzado!

Hoy es uno de esos días en los que mi #hemofilia está tratando de sacar lo mejor de mi, hoy no pude moverme, tengo un #sangrado en mi #rodilla izquierda.
No haré mi rutina de ejercicios en los próximos días lo que me lleva a un estado tanto física como mentalmente.

En cuánto el sangrado seda y la inflamación disminuya, comenzaré de nuevo a realizar mis ejercicios. Seré más fuerte que mi condición y seguiré adelante.

Se que haya afuera hay toda una #comunidad de transtornos de coagulación y también mucha gente que tiene en su mente un #fantasma de miedo con respecto a hacer actividad física teniendo hemofilia o algúna otra coagulopatia.

La profilaxis no ayudará a reparar articulaciones que ya están lesionadas.
Sin embargo, disminuirá la frecuencia de las hemorragias, y puede reducir el avance de la enfermedad articular, y puede mejorar la calidad de vida.

El factor no es lo único importante para mantener tú salud; el movimiento es igual de significativo. Estar activo durante este tiempo en aislamiento es crucial para mantener una buena salud física y mental.

Tú puedes!
Solo quería recordárselo

My son Ted, has severe Hemo B with no family history. I am part of a group of parents who set up a charity called Local Families with Bleeding Disorders in and around London, UK, to support families by families. This year, for World Haemophilia Day we were All In Red by wearing red for #PEwithJoe, the UK online PT who is doing worldwide PE sessions, this allowed us to stay connected and engage in positive activity which keeps our bleeders strong too. We did some yoga with an amazing instructor in San Fran with the power of zoom. We held a competition to say #BleedersSayThanks to our National Health Service with the charity run by Alex Dowsett, called Little Bleeders, who is a UK Olympic Cyclist with Hemophilia, and we started our series of webinars for children on the day for our younger communities, where they were shown self infusing by one of our amazing community advocates who has established a career in cricket!! It’s been great to keep connected online and celebrate life with bleeding disorders!! Happy WHD!!

Being an Administrator and ensuring that the logistics for people living with hemophilia in Kenya is an amazing opportunity to serve the ever dynamic and also challenging job that I have been doing for the past 5 years. It has indeed changed my life as I serve to change their lives. It’s been humbling, tearful, joyful, and also fantastic to see that PLWH love each other, they speak as one and the global community does care about each other. I am honored to continue serving the Hemophilia community and also add value to their lives and they add value to mine. It gives me the hope and courage to wake up everyday and see a smile.

It has been a great pleasure to be part of this global community as a haematologist looking after kids with bleeding disorders in Sri Lanka.
Wishing you all a happy & healthy World Hemophilia Day !

Je m’appelle NSAPU MVULA BASAULA François-Xavier Vinnie, suis hémophile de facteur VIII et j’ai aussi un grand frère comme moi. On était diagnostiqué malade depuis nos bas âges. Pour moi, cette maladie est comme toutes autres maladies, la seule différence qui existe entre elles c’est au niveau du traitement. J’ai passé une belle enfance, malgré l’absence des traitements qu’il fallait, je me disais que cette maladie ne fera pas en sorte que je puisse m’amuser comme tout autre enfant, j’étais vraiment un enfant heureux et épanouie. Après nos amusements mes amis rentraient chez-eux sans problèmes, mais moi avec les hématomes presque partout dans tous le corps. Ses derniers ne m’ont pas empêché de vivre heureux comme les êtres humains sains, au contraire me protégeaient même quand il s’agissait de faire les jeux brutaux, ils connaissaient mon état de santé. Même aujourd’hui étend grand suis toujours heureux, parce que cette maladie ne m’empêche pas de vivre, où bien de faire certaines activités comme les sujets sains.
On sait qu’elle existe et qu’elle est fatale si on ne se prend pas en charge au moment opportun.
Je rends grâce à Dieu, et à ma famille qui nous ont donnés l’amour qu’il fallait. Certes, quand on tombe malade les cœurs des gens sont debout.
Sa fait aujourd’hui presque 3ans que je suis suivi par le Dr LEDAGA, grâce à elle nous les hémophiles du Gabon nous pouvons acquérir les soins qu’il faut. C’est aussi grâce à cette dernière qui ne cesse de nous bousculer pour qu’un jour notre Association Gabonaise des Hémophiles puisse avoir une bonne prise en charge auprès des autorités compétentes pour nous les malades.
Je remercie encore la Fédération Mondiale de l’Hémophilie qui ne cesse de nous venir en aide à tout moment.

Holaaa¡
Mi Historia inicia desde los 6 meses de edad cuando fui diagnosticado con Hemofilia A Moderada, Soy Felipe Posada Bravo ya tengo 14 años vivo en Medellín, donde también me diagnosticaron wombilebran com deficiencia del factor 8, he batallado durante toda mi infancia y he podido aceptar que no es una enfermedad sino una condición, en la cual la he convertido en mi amiga , pues es la mejor forma de sobresalir Como HEROE en cada Hemorragia ,salí de hospitalización hace 2 semanas del Hospital San Vicente Fundación y continuo mi vida normal por que es lo más valioso que tengo y mientras halla vida hay ESPERANZA…..NO SE OLVIDEN QUE SOMOS NUESTROS PROPIOS HEROES ¡

A Journey of Life
Its not about Perfect. Its about effort and when you bring that effort every single day, that’s where transformation happens. That’s how change occurs.
I am Tahreem Habib currently doing BS Biochemistry from Quaid e Azam University Islamabad. I am patient of Bernard Soulier Syndrome; a hematologic disease related to impairment of platelets leading to formation of dysfunctional platelets.I am the elder and first child of family. I was diagnosed with this disease when I was 3 years old. As a rare bleeding disorder and no family history of any of the bleeding disorder my parents were not familiar about the underline cause when they experienced my nose bleeding, bruises. Having child with bleeding disorder made my parents more observant and careful.
When my parents first experienced my nose bleed and bruises they took me to PIMS Hospital which referred me to AFIP for tests which were not available there at that time. After diagnosis, I sought medication from PIMS hospital whenever I experienced any issue. Neither me nor my parents have nay idea abut organizations working for patients with bleeding disorders until we met Dr. Tahira Zafar as hematologist in the same hospital and I got registered in society that work for patients with bleeding disorders.
As a child with bleeding impairment I had to face a lot of problems in school and daily life. I had to be more careful whenever I did something so that I don’t get a wound or cut. I spent days and nights with my gums bleeding and treating myself to stop bleeding. I still remember when I lost my first baby tooth and had been bleeding for hours. These times were hardest when it happened in school or any other place. Everyone looked at you as in a way that its all your mistake. But still in all these circumstances I was an outstanding student of my class. I always stood first in my class with involvement in extra curricular activities. I secured more than 80% marks in my matric and intermediate with a clear distinction in my class. I am always grateful for my parents and my teachers for being a great support in my entire academic life.
“Life is not bed of roses” is the term which we used to hear and I realized this when I became severely ill in my fourth semester of graduation. My hemoglobin level dropped to 4 and I wasn’t able to do anything. That phase of my life was the most terrifying as I experienced death closely. It left a long lasting impression on my mind because I can’t got over that incidence. But I didn’t lose hope and moved forward. I continued motivated myself and my parents made efforts to keep my morale high at each step whenever I feel down. Now I am in my last semester of graduation and have high aims. I am also involved in many extra curricular activities, take part in different competitions and also part of different organizations .
I have high ambitions for my future and will try to do more for my country and patients with bleeding disorders. I want to make my parents proud and happy as my success is just because of them. I hope I will achieve my goals in near future.

Comencé desde hace 30 años a trabajar como voluntaria en la AVH , me di cuenta que mientras todos estuvieran bien , mi hijo también lo estaría , hay que seguir trabajando para darles mejor vida a todas las personas que viven con hemófilia y sus familias

Hola, mi nombre es Amin Esteban Gutierrez Aguilar de Bogota Colombia diagnosticado con hemofilia A severa.
Un saludo a todos esos guerreros que como yo, vamos luchando dia a dia.

Saludos por el dia mundial de la Hemofilia, desde Peru abrazos a la distancia a nuestros hermanos de sangre. Bendiciones