Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us.聽 We educated ourselves and our […]
Strong. Every January I reflect on the year to come. I chose a word based on something personal, either to myself or to our family. This year I chose the word: Strong. I chose that word specific to my goals for the year. I鈥檝e been a consistent runner since 2015. In fact, I love it […]
Attending HFA鈥檚 Symposium has always fascinated me. I have attended a few symposiums with my family: St. Louis, Cleveland, Las Vegas, and San Diego. During symposium, I networked with individuals who were in various fields: social workers, physicians, nurses, physical therapists, and patients.聽 Days were filled with inspirational kickoff and educational breakout sessions. There […]
We are now four or five months into this very bizarre time of the COVID-19 Pandemic. If you鈥檙e like me, 聽you鈥檙e not getting any more used to this 鈥渘ew normal鈥 but rather more than ever, ready for it to be over. While we may be ready to get back to life the way it […]
You know what I miss? You. I miss you. I miss looking into your eyes, I miss tearing up when I try to explain my struggles and listen to yours. I miss smiling with you when I tell you about my adventures and you tell me yours. I鈥檝e been a part of the bleeding disorder […]
鈥淓veryone can be great because everyone can serve.鈥 鈥 MLK Jr. 鈥淪ervice to others is the rent you pay for your room here on earth.鈥 鈥 Mohammed Ali Volunteering is gift. It can be the best things you鈥檒l do 鈥 both for your community and you. For me, there are mental health benefits in getting […]
Un plato lleno de virus y un poco de brillantina es todo lo que se necesit茅 para explicar a mis ni帽as la importancia de lavarse las manos. Cuando mis hijas eran peque帽as enfatizaba fielmente en la importancia de lavarme las manos con agua y jab贸n. Teniendo en cuenta de que ellas tienen un trastorno […]
When I received Hemophilia Federation of America鈥檚 Infusing Love: A Mom鈥檚 Blog schedule back in January for this year鈥檚 blogs, I thought, 鈥淥k I have plenty of time to think and write the best blog yet for me.鈥 Wrong鈥 As the months went on, the craziness with my boys鈥 school and extracurricular activities and sports, […]
Sometimes I feel that Maddox doesn鈥檛 even have hemophilia, because he鈥檚 such a wild man, and responds so well to his new medication. At first, we were so scared as a family to make the switch. Understanding that every family is different, we didn鈥檛 want to be swayed in the wrong direction. We have seen […]
Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out. When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We […]
The Infusing Mom bloggers have a set schedule on when articles are due each week. As my date drew near, I believed I had my topic. I had been scrolling through my Facebook feed and noticing pictures of kids whose parents had captured the fun they had that day. My kids are older, and […]
As bleeding disorder parents, we are planners. We love to know what, how and when something is headed our way, and we will be prepared. We have been disaster relief preparing since day one. We have hospital/ER bags ready to go at a moment鈥檚 notice. Even during this age of smart phones, we have […]
Saludos a todas las madres que, como yo, tienen en su vida y en sus corazones una persona muy especial que llena sus d铆as de felicidad. Les contar茅 un poquito sobre mi vida. Crec铆 en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condici贸n como algo normal. Mi […]
I remember when Nick was much younger, we went to a meeting and one of the sessions was on transitioning from teen to adult. I remember thinking I didn鈥檛 need/want to go to that because we were nowhere near that time. I blinked and all of a sudden, we are at that time. And […]
There are times as a hemophilia parent where hemophilia is not at the forefront of your mind. Times where you can just live and enjoy every moment without worry. It鈥檚 almost as if hemophilia is a distant memory. You run on autopilot 鈥 not thinking, just doing. 聽\At these times hemophilia has absolutely no impact […]
Hola a todas las lindas mamas de este blog, mi nombre es Lupe Torres, vivo en la ciudad de Las Vegas, NV. Soy mam谩 de tres hermosos hijos. Tengo una hija de 23 a帽os, un var贸n de 24 y mi m谩s peque帽o de 18 a帽os. Mi hija Michelle de 23 a帽os fue diagnosticada con VWD […]
Even though I have never attended camp, and had no idea what it was all about, I did not want my son, my only child, to miss out on the experience. The first time Omar attended camp; he was just 7 years old. He looked so sad and didn鈥檛 want to stay, but we all […]
The English version of this Infusing Love: A Mom’s View blog can be found below.聽 En Puerto rico se celebra el D铆a de Acci贸n de Gracias (Thanksgiving) al igual que en los Estados Unidos continentales. La verdad es que todos los d铆as festivos federales se celebran, pero 茅ste lo hemos 鈥渃riollizado鈥 en gran medida. […]
My son鈥檚 pediatric ophthalmologist tells a story about a little girl who was about 4 or 5 years old who came in for an eye appointment due to some concerns. It was determined the little girl had severe double vision. She was seeing double of almost every single object in her line of sight. The […]
My son, Jackson, is nearing his 12th birthday. For our family, hemophilia is genetic. so Jackson has been dealing with his diagnosis since birth. We鈥檝e been very open about his bleeding disorder since he was little; sharing and educating our family, friends and teachers. We are fortunate in that he can feel a bleed before […]
Wow, it鈥檚 the end of the year and the end of a decade! I am not leaving this decade the way I began. My decade began with a 7-year-old son with severe hemophilia A, who I wouldn鈥檛 allow to play recreational sports. I was pregnant with twins, one being a boy, unsure if I was […]
Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]
Tener una buena comunicaci贸n con nuestros hijos e hijas no siempre es f谩cil.聽 Para esto es imprescindible saber estilos adecuados de comunicaci贸n para conocer a nuestros reto帽os m谩s, para saber lo que piensan, para entenderlos m谩s y para saber c贸mo se sienten.聽 De hecho, la comunicaci贸n entre padres e hijos es esencial para fomentar […]
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.
CONTACT HFA
999 N Capitol Street NE Suite 201
Washington, D.C. 20002
Phone: 202.675.6984
Fax: 202.675.6983
Email: info@hemophiliafed.org
HELPFUL LINKS
FOLLOW HFA
CERTIFICATIONS
