Factor-H coordinates a Social Program in Venezuela for the improvement of the quality of life for individuals and families with Huntington’s disease (HD) in the towns of Barranquitas -Rosario de Perijá Municipality- and the area of the community of San Luis, in the city of Maracaibo, San Francisco Municipality, both in the state of Zulia in Venezuela, which are the sites with the highest prevalence of the disease in the world.
Barranquitas is a town of about 6000 inhabitants and the neighborhood of San Luis can reach a population of about 3,500 people, with inhabitants moving between these two locations frequently. Most of these families live in a complex social dynamic that has been generated by the disease, sometimes with more than one affected individual in the house.
Most of these families (95%) live in extreme poverty. There is no functional health system in Venezuela. There’s no investment by the national government in the health care of these patients and their families. The assistance these families received via Factor-H and Habitat LUZ is therefore critical.
Currently, the program attends to 205 people with symptomatic HD who are registered in our databases, including in Barranquitas and the San Luis area, but new cases continue to appear from other locations. The absence of genetic diagnosis makes it hard to ascertain the total number of HD carriers in these towns, with many more exhibiting new symptoms all the time.
The climate in both locales is extreme, with temperatures between 35°C and 40°C and with a relative humidity above 85%, little wind and 12-hours of direct sunlight per day; daily power failures and power rationing between 4 and 8 hours; and water rationing, among many other problems.
Thanks to a generous donation from the Fundación Cinco Palabras from Spain, we were able to purchase 205 battery-powered electric fans for the affected individuals and their families. Cinco Palabras chose Factor-H as a non-profit to support in Dec 2023 and raised money towards supporting the Venezuelan families – see their website story on Factor-h HERE.
These fans provide a welcome relief from the heat, particularly for bedridden patients who have no respite from the overwhelming temperature inside their tin huts. In San Luis, these were delivered on Thursday, March 21st. In Barranquitas we delivered them on Saturday, March 23rd, during the Gratitude Day celebrations.
In San Luis, the distribution took place in the Restoration Center Church, which has been a constant support along with an important group of volunteers; while in Barranquitas, the donations were delivered at a fishing cooperative, which was kindly facilitated by a volunteer of Factor-H. A total of 22 volunteers collaborated in the control and distribution of donations, while in Barranquitas there were twenty-five 25 volunteers.
We also distributed three hundred (300) brochures with simple recommendations for the improvement of environmental conditions in the home.
Thank you for contributing to our cause!
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