By Fel Echande
My family is a mix of Costa Rican and Mexican descent, and we have lived in the USA for 24 years now. I am a commercial driver, and my wife, Laura, is a photographer. We have two sons, Fiach, 22 years-old, and Yanni, who is 17.
Our first-born son was diagnosed with severe hemophilia B at 10–months old. After consistently showing up to the pediatrician’s office with unexplained bruising, our physician suspected abuse. However, after running a battery of blood tests, it became evident that Fiach has hemophilia.
With no family history of a bleeding disorder, we knew very little about hemophilia. We had a lot to learn. We knew the diagnosis was going to be a struggle, but thanks in part to amazing support from the bleeding disorder community, our family is thriving.
Twenty-plus years ago, the internet was in its infancy. In those early days, the lack of information was challenging us. There was very little information available in Spanish.
My wife came across a book authored by Laurie Kelley, which had been translated to Spanish (no longer available in Spanish). The book proved to be a huge help for us as we struggled to find more information.
Outside of the clinical support provided by our medical team, we began to realize the importance of connecting with others in the bleeding disorders community. Becoming involved with local and national chapters was instrumental in broadening our education, comfort, and ability to deal with hemophilia.
Laura and I began meeting so many wonderful people in the community. Each friendship brought a fresh perspective and helped us see that our son could live a largely normal life. We learned so much from the individuals and families having already walked in our shoes.
Making friends with other children with hemophilia helped our son understand that he is not alone in the world. The friendships taught him to embrace life with a bleeding disorder. When things were stressful for us as parents or for Fiach as an affected child, we knew we could lean into community-based support provided by our local chapter and organizations like The Coalition for Hemophilia B.
Through our involvement we learned to be strong advocates for ourselves, for our son, and for others in the bleeding disorders community. As the years went by, we became more knowledgeable and confident and were compelled to get involved and give back to the community that had helped us so much.
We are now very involved in volunteering. I am currently on the board of directors for the Hemophilia Association of San Diego County. My wife and I have been part of National Hemophilia Foundation’s Guias Culturales (Cultural Guides helping NHF with workshops for the Hispanic families). My wife was involved with the Hemophilia Chapter of Northern California’s The Female Factor Retreat. We are both very involved nationally with The Coalition for Hemophilia B and we also lead community support groups to help our local families.
We encourage all bleeding disorder families to get involved, get educated, and take advantage of the support provided by the organizations serving this community locally and nationally. Attend events, connect with families, and learn through our shared experiences. For those who are dealing with a new diagnosis know that it does get better. Our community is a family—don’t ever be hesitant to reach out.
Spanish Language Resources
The Coalition For Hemophilia B
Newsletters in English and Spanish
National Hemophilia Foundation
Guias Culturales (Cultural Guides)
https://www.hemophilia.org/educational-programs/outreach/guias-culturales
HemAware en español, https://hemaware.org/es
Hemophilia Federation of America
Sangre Latina
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