Building Hope in Bolivia
By Deniece Chevannes, Health Educator
This past May 16th I celebrated my fourth anniversary at HoG. To be completely honest, I usually don’t remember my anniversary date. But this year I did, because it coincided with my last training trip to Bolivia. For the past four years it has been my privilege and honor to lead the HoG twinning project with Fundación Nacional de Hemophilia Bolivia (FUNAHEB).
A program of the World Federation of Hemophilia (WFH), a twinning project pairs an established hemophilia organization (HoG) with an emerging hemophilia organization (FUNAHEB) to share knowledge, experiences and best practices with the hopes that this mentoring relationship will lead to improved care for those who desperately need it.
Four years ago, as we embarked on a journey to improve care in Bolivia, I did not realize how much the experience would also change my life. Our goals for the twinning were ambitious, yet I felt achievable, given HoG’s experience in bleeding disorder care and the passion and commitment of our partners. Our objectives were to:
- Establish diagnostic services and a registry of patients with inherited bleeding disorders
- Educate patients and families about living with and managing inherited bleeding disorders
- Provide capacity building and training to our partners to establish a strong and solid nonprofit that would lead the change in Bolivia
I am pleased to announce today that there has been a diagnostic lab established in Children’s Hospital in Santa Cruz that has started correctly identifying factor deficiencies. There have also been training and workshops for families, patients and medical providers to learn how to manage bleeding disorders. The most important change has been the hope that has grown in the people in Bolivia.
The Bolivians feel solidarity with their HoG family. During 2015 Spring Family Camp HoG children created handmade cards with messages of support and encouragement for children and their families in Bolivia. These cards were added to packets along with The Hemophilia Handbook in Spanish and a Factor Fido coloring book. We took these packets to Bolivia and provided one to each family.
As we met with the families and discussed future plans for FUNAHEB, it was gratifying to see how empowered they felt to advocate for change. It was encouraging to see young people stand up and eloquently explain their vision for the future of their organization. For me, as a public health professional, it was rewarding and life-affirming to know that my small contribution could have such an impact in the lives of a people who have become family to me and to all of us at HoG.