Twinning: HoG working to “Close the Gap”
Horizons in Hemophilia, April 2012
By Deniece Chevannes, MPH, Health Educator
April 17 is World Hemophilia Day; a day that is celebrated to increase awareness of hemophilia and to help “close the gap” of care around the world. It is estimated that 1 in every 1,000 men and women have a bleeding disorder; and of these about 75% do not receive adequate treatment and, even worse, some receive no treatment at all.
Hemophilia of Georgia is actively working to help “close the gap” in Bolivia. Like many other developing countries, Bolivia has very few resources and care for inherited bleeding disorders is almost non-existent. To help “Close the Gap” HoG has established a twinning partnership with the Bolivian hemophilia organization through the World Federation of Hemophilia to assist, train and educate its members on ways to improve care for inherited bleeding disorders.
Currently in Bolivia there is no diagnostic testing or readily available factor for treatment of bleeds. If a child with a bleeding disorder such as hemophilia has a bleed there is no factor at home or at the local hospital to help. If the family is lucky, they may be able to get cryoprecipitate from the local blood bank to treat the bleed. Because of this lack of treatment most people in Bolivia with a bleeding disorder develop joint damage.
To help “close the gap” HoG is working with our twinning partners to advocate for improved access to service and care. We are also assisting with educating people and families impacted by a bleeding disorder on how to build a hemophilia organization, how to stay healthy, how to live with a bleeding disorder, and how to come together as a group so that they do not feel isolated.
Our twinning partnership is making progress. Recently our Bolivian twinning partners successfully advocated to have inherited bleeding disorders recognized by the Ministry of Health in Bolivia. Additionally, people in Bolivia with a bleeding disorder can now access a website, https://www.hemofilia.org.bo, to get education about bleeding disorders and join the organization.
Having a bleeding disorder is not easy. This year as we celebrate World Hemophilia Day let’s be grateful for the access to care we have in Georgia and remember to support HoG in its effort to help “Close the Gap” in Bolivia.
Watch for news of how your family could help “Close the Gap” for families impacted by inherited bleeding disorders in Bolivia!