Recently we visited affected people in the following towns/communities to understand their needs: El Dificil, San Angel (Magdalena), Juan de Acosta and Barranquilla (Atlantico), Medellin and Bogota. We introduced Factor-H to these communities, as well as to spoke to the local health officials and government authorities. It was a 4 day (5 nights) intense visit. We gave talks at the local universities, visited the rural communities of Juan de Acosta, El Dificil, San Angel and Barranquilla in their homes, and spoke to local health authorities in Medellin and Juan de Acosta. We met Habitat for Humanity in Bogota which resulted in the official start of our work to improve housing conditions in Colombia!
The trip was life changing for Factor-H!
Familia Oviedo Oviedo
This family represents everything that is devastating about Huntington's disease. Factor-H visited them recently in their family compound in El Dificil, Magdalena. We visited with the local patient representative, Mariela Campo, a true blessing of a person for all those living with HD in Colombia. In this family, there are many affected patients living in a house with no running water, little access to food or electricity. Dilia is the 'grandmother', whose husband died of HD. They had 11 children, most of whom are HD positive or have died from HD already. Most of the affected siblings live with Dilia in her compound (which she could purchase after her husband died) in very precarious conditions. Most of Dilia's kids have kids of their own, who are all at risk. Several of the adolescent boys cant complete school because they have to care for their sick parents. This situation affects everyone in the family, old and young. The family is in desperate need of support.
Factor-H, together with the Colombian communities, are working to improve their housing conditions so that all the affected people can be cared for better. We will try to bring fresh water to the compound so they can work their land and have access to food regularly. Other needs remain: education for the kids, diapers for sick people, beds, electricity, medication
Familia De Avila De Oro, Comunidad de Sabana de San Angel, departamento de Magdalena
A very large family living in San Angel. We recently visited a family compound there, approximately 6 hrs drive from El Dificil, and an area very difficult to reach. There are no paved roads, and the communities live in almost complete isolation. Most people work from agriculture or taking care of livestock.
We visited a large number of affected family members of a very large family (de Avila de Oro family) in one of the family's compounds. In this compound, 21 related family members live in a 5-house compound, devoid of running water or electricity, and in extreme poverty conditions.
They are all descendents of Maria de Oro, one of 8 siblings, of whom 4 died from HD, including Maria. Maria had 12 children, of whom at leat 7 have HD. The average person in this very large gamily has an average of 6 children, and many of the marriages are blood-related (married to first cousins). The incidence of HD is very high, including juvenile cases. I estimated that in the 4 generations descendents from Maria, apprximately 1330-1800 members are currently at risk for HD in an area of approximately 60 square miles.
During our visit there in February 2013, we met with a hundred plus relatives, including many kids under ten. They are all at risk for HD, and chances are 50% will develop HD. This is a community which has no access to medical care (they had never seen a doctor, and knew little about the disease). Many kids do not have birth certificates, and most are uneducated. They have not been vaccinated, and suffer from many diseases. Their siatuation is dire.
Below are some pictures from the visit to this family. We counted with the help of the local authorities, also related by blood to this family, and who promised to help bring aid to theses families.
Families in Medellin
Families in Medellin require access to better housing conditions. The situation of these families is different from the more rural communities of Magdalena. We are currently focusing on improving their living conditions by remodeling some of these families' houses to account for the needs of people affected with HD. The first project with Habitat for Humanity will start soon in Medelling, taking care of 5 identified families during our recent visit in February 2013.
There are also other needs, including medical care, diapers, wheelchairs, etc.
Below are some pictures of the area in Medellin where these families live, and a picture of a typical building in this part of town.