Cada año vamos avanzando en conseguir nuevos fármacos y nuevos procedimientos para mejorar la vida de cada persona hemofílica. Espero que pronto, a nivel mundial, esto sea una gran y maravillosa realidad.
Mucho animo a todos y un millón de abrazos
Tere

As a mother of a child with hemophilia, on top of worrying about how to protect my family from SARS-CoV-2, I also worry about my hemophiliac son, since his bleeding episodes can be quite unpredictable. Just in the first week of April, he was admitted to the hospital due to recurring hematuria. He was further diagnosed with urinary tract infection.

My son was administered with antibiotics and Factor 9 concentrates. If not for the latter, his hematuria would’ve lasted a lot longer and his continued stay in the hospital would’ve dealt a huge blow to our finances. Thankfully, donated Factor 9 concentrate products were available, greatly reducing the treatment cost.

I want to extend my deepest gratitude to the World Federation of Hemophilia for their continued support, especially in these trying times!

Luningning E. Duran
Mother of a child with hemophilia

With the emergence of the COVID-19 pandemic, many people were forced to change their lifestyle as a response, including myself. As a law-abiding citizen, I follow the quarantine rules imposed by our local government and adjust accordingly. However, while I may be relatively safe from contracting the virus, I am still susceptible to spontaneous bleeding due to my severe hemophilia.
On the 8th of April, I felt severe pain in the areas around my right hip and groin. The pain’s severity greatly inhibited my functional capacity, which prompted me to have myself admitted to the hospital.

During admission, I was treated with Factor 8 concentrate products that our organization received as a donation. The pain slowly subsided with each infusion and I slowly regained the functional capacity that I’d lost. I was discharged from the hospital after a few days.

With this, on behalf of the Hemophilia Association of Davao, I would like to thank the World Federation of Hemophilia and Dr. Jeannie Ong for their continuous support to our organization. Patients like me who suffer from hemophilia will not be able to enjoy the quality of life we currently have if not for the available treatment made possible by your support.
May God bless us and may we all remain safe from the pandemic!

Ameer Jann Kendric Peralta
HAnD President

While the world is in a standstill due to the COVID-19 pandemic, and even though we’re merely at home with limited physical activity, my brother and I, who both have hemophilia, are still suffering from occasional bleeding episodes, such us in our ankles and knees.

Thankfully, while movement in our city has been greatly restricted with the extended community quarantine having been imposed, the hospitals are still open, so we can still have the available medications administered. Medications which we receive as donation from the generous World Federation of Hemophilia.

On behalf of our fellow hemophiliacs in the Hemophilia Association of Davao, we express our gratitude to the World Federation of Hemophilia. We thank you for your provisions that allow us people with hemophilia to continue living normally despite our condition. God bless you!

Elvin John D. Balio and Karl Dave D. Balio
Hemophiliacs

Today, we recognize you – the bleeding disorders community. It is a privilege to work with you. Thank you for sharing your stories and experiences. Wishing you all a happy and healthy World Hemophilia Day!

World Hemophilia Day is the opportunity to renew the oath we all took to support and assist the global hemophilia community. For me, it has been an honor and a great pleasure to be part of this global community. I hope we continue the journey and to together celebrate more WHDs.

Hola!!!

Soy Jaime Moscoso de Panamá, paciente con Hemofilia A con Inhibidores

En mi familia ya sabíamos de la hemofilia porque había tenido tíos con hemofilia, sin embargo, el escenario se hizo cuesta arriba cuando me diagnosticaron los inhibidores, han sido 21 años batallando con ellos, sin embargo, no ha sido un obstáculo para el desarrollo personal y profesional, al contrario me ha permitido aprender y compartir conocimientos y experiencias con los demás.

Agradezco mucho a mi familia, amigos y mis doctores (Rafael Joly, Rafael Aparicio, Dimas Quiel) por el apoyo que me han brindando y continúan haciéndolo para tener una mejor calidad de vida.

Happy World Hemophilia Day!

Gracias a todos por compartir sus historias. Muy feliz de pertenecer a esta comunidad y ser parte del equipo de la FMH 🙂

just a few months in the organization and I can say it is one of the best places to work. The culture, the challenges. It is all wonderful because everyone shares the same vision and is dedicated to the mission.

It has been my pleasure to work with hemophilia experts, treaters, caregivers and most importantly our patients. We look forward to seeing all of you again!

Vielen Dank an alle die sich heute Zeit nehmen um zu feiern!
Liebe Gruesse von Montreal,
Alain

Todo empezó cuando mi hijo Erick tenía 8 meses lo intervinieron quirúrgicamente era algo ambulatorio sin embargo de algo tan simple se volvió una pesadilla ya que 3 veces lo metieron a quirófano en 2 días xk pensaban que no había quedado bien asta que a alguien se le prendió el foco de porque tanto sangrado sin embargo mi hijo ya mero y no la contaba estaba muy débil le tuvieron que transfundir sangre plasmas creoprecipitado de todo y alfin salió de esa los doctores me dijeron que si no había visto algo raro antes de la operación y pues yo sólo les dije que le salían moretones pero yo le echaba la culpa a mi otro hijo que me lo mordia y pues resulta que no era así pues tenía hemofilia y pues yo no sabía que existía la enfermedad y de ai a sido muy difícil para mi porque por más que lo cuido se me a descalabrado se le han hecho hematomas y de todo un poco pero gracias a su medicamento no a pasado a mayores.