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Reflections on a visit to Zulia

Team work and scientific education

Every year, Factor-H Vice President Roger Cachope and I visit the Colombian & Venezuelan communities at least once, and over time we have developed a close relationship with many of the HD families we support. These visits are particularly important for me, because they allow me to see first-hand where we are making progress and what still needs to be done. They also offer a respite from the (mostly) intellectual life I lead as a scientist. 

These trips are usually packed with home visits, healthcare events, seminars, and meetings with local leaders and government officials. But the most important part does not often get communicated – I’m speaking here of the deep bonds that form amongst members of the teams, and with the families we serve. Having worked in these communities for over a decade now, I have seen kids grow up to become adults, with some of them starting to develop symptoms of HD, and many of my HD friends have passed away. There are amazingly intimate moments of sadness and joy intermixed with the many formal functions and program activities we have to do when we visit. 

From May 21 to June 6, I spent time with the teams in Colombia and then in Venezuela. When we visit from the USA, we try to pack as much as possible into the time we have, and we usually get the entire team together. The Factor-H/Habitat team is now larger than ever, thanks to an increase in donations. The “regular” team under Marina González de Kaufman includes 3 social workers, a psychologist, a general physician, a neurologist, a systems engineer, and all the Habitat foundation staff who take care of logistics, purchasing, and administration; and professional architects and economists who oversee the areas of community development and data collection. This time we also had the good fortune to meet with our colleagues from Caracas: Gindel Delgado (a journalist making a documentary which will be shown at the EHDN meeting this September), Vladimir Marcano (photographer) and Aleska González de Zambrano, the president of the Venezuelan HD association. We also got to spend time with Alex Fisher, an occupational therapist from the UK who is now a regular member of the team, and who visits Venezuela often to manage the caregiver’s program. Alex is an amazing woman and friend, and she has earned the love of these communities.

Part of our strategy when we visit is to educate local community leaders and institutions about our cause, and to try and get them to join in. There is still a lack of awareness about the disease and the situations that families experience in Zulia State. Therefore, whenever we can, we speak at medical conferences about HD and about our work in Venezuela. This time, Roger Cachope and I spoke at the Zulia State Medical Congress, to an audience of medical students, nurses, and residents, explaining about the clinical management of HD and providing an update on therapeutic developments. Marina reviewed our work from the humanitarian and social perspective with the Zulia communities, and Lennie Pineda spoke about genetic testing and counseling — vital services which are currently unavailable there.

Beyond these formal seminars, we also hold many informal meetings with our teams – to review each program and set new goals for the rest of the year, and to bring new people into our ever-growing efforts to help these communities. During this trip we were lucky to be able to bring in volunteers from the local Red Cross organization and the School of Dentistry…and for the first time, a local dairy business (“San Simón”) agreed to provide nutritional supplements for the families we represent.

Below you can read Marina’s impression of the final day of the trip.

June 6 in San Luis: More than we expected. 
by Marina González de Kaufman

An activity that was simply part our quarterly Special Medical Activities plan became much more than just the opportunity to provide health care to fifty-three (53) children in the San Luis area. That day, for the first time, the San Simon Group Foundation, one of the largest dairy product suppliers in Venezuela, donated a bottle of nutritious milk for each child, with four people from their own team participating. This marked the beginning of a relationship that we are sure will be of great contribution to the communities with Huntington’s disease (HD) that we serve.

In addition, the visit and commitment of the Red Cross was another important moment. It was significant for two reasons. First because they gave first aid workshops for people who live with and care for people with HD, and for our collaborators and volunteers. But even more importantly, their support will now extend to each quarterly health activity, with the collaboration of their volunteers.

The activities of the Adolescent Support Group also began on June 6, with our soccer team of San Luis and its coaches. The first approach to gain trust with Marta, our counselor, was a moment of joy in which the children were able to begin a process that will lead them to know themselves better, and to have the necessary emotional tools to be able to address the challenges of HD in their lives. Step by step this program will generate changes that we will only see later… but will bring these kids things they really need.

So June 6 was a day of many achievements… and in addition, Nacho was still with us, since he and Roger were visiting Venezuela for a few days, meaning that the day was full of many emotions for the Factor-H team.

The health activity, the main purpose of that day, had the support of two pediatricians and two neuro-pediatricians, plus 10 young members of the Community Service of the Faculty of Dentistry, who provided 20 patients with dental diagnoses, fluoride treatments, and other simple procedures.

Thanks to Dr. Anthony, our physician based in San Luis, it was also possible to offer vaccinations for children and adults. Fifteen children were vaccinated that day. Twelve  received Diphtheria Toxoid, one got Pentavalent, and two  received MMR (measles, mumps and rubella) vaccines. A group of five adults were also vaccinated.

Organizing these massive activities is not a simple task. Weeks of preparation are required, involving the documentation and base formats for the different points of attention to the patient, in order to make everything flow without delays and in the most effective way for parents and children.

I would like to end this message by expressing gratitude to  our support team of 35 employees and volunteers. Everything we do is possible thanks to the work they do to make sure all tasks are done on time and in an organized manner.

For example, the pharmacy point operates with four people who manage the distribution of medicines and nutritional supplements. The access control and distribution of patients to the points of care is also carried out by four people, because it includes obtaining signatures for informed consent to receive medical-dental care and for taking photographs. And each doctor and dentist have an assistant who registers the patients and the diagnosis. Then there are all the other points of care that are carried out by our collaborators and volunteers, such as recording the weight and height of the patients, providing entertainment for children, managing medical records, managing control of the waiting area, providing water and food,  managing control of all supplies, etc.

In short, this is the group that, behind the scenes, makes everything happen so that doctors and dentists can fulfill their functions. For this reason, it is important for me to publicly say: Team Venezuela: Thank you!

Hope for a better future

From its inception, Factor-H has prioritized working with children and adolescents at risk for HD. These young people often have to act as caregivers for their affected parents, or to look after their own siblings. The specter of HD is everywhere for these kids, and we felt they needed support to grow up better informed, and more resilient when facing the disease head-on. Over the years, by conducting recreational and educational activities, we have helped create a community of youth who share life experiences and can support one another in times of crisis. 

Many of these children have to grow up on their own – abandoned by a parent, or occupied caring for a sick mother or father, they often have to give up school, spending a lot of time on the streets. Because of the complex social and economic conditions of these families, we put a premium on ensuring that we create activities where “kids can be kids,” and use these recreational or athletic activities to facilitate education not just about HD, but about the importance of education, discipline, and cultivating healthy human relationships.

The program has evolved during the years to also provide psychological and medical support, and new efforts to establish scholarship programs for education and professional training, so that we can help these young people break free of poverty.

In San Luis, we initiated a fútbol club with 40+ kids of the Abrazos program. Thanks to a donation from Elena Cattaneo, we purchased shoes and jerseys for all of them. Through this program, two local coaches now teach the kids physical exercise, coupled with “group sessions” where the kids can speak about their lives

Health at the frontline

Providing expanded healthcare is Factor-H’s top priority. Our programs include individual attention, including neurological visits, and a specific effort directed to patients in late-stages of the disease via our caregivers program and in-house visitations. We also conduct massive medical activities for HD individuals and in support of our pediatric program. When possible, a team of volunteer health professionals conduct large-scale activities in San Luis and Barranquitas, once every quarter. 

On June 6 this year we hosted a pediatric day in San Luis which included vaccinations, pediatric and neuropediatric care, and dental/odontological services. This team of volunteer students and clinicians are simply amazing, and we are extremely grateful to the local church that donates the physical space where these events take place, away from the sun and the heat, so that we can serve this community. 

A total of 53 children were seen on a single day. These medical days allow us to track progress of our nutritional support for children and ensure we identify any ongoing or new medical issues that arise in these vulnerable kids.

Community building

The communities of San Luis and Barranquitas are the towns with the higher incidence of HD in the world. In most places there is one case of HD out of every 10,000 people. But in these poverty-stricken fishing communities the rate is more 200 times higher — fully 2% of the population is symptomatic right now, and 10-20% of the population may carry the defective HD gene and are at risk of developing symptoms at some point in their lives. Without a lot more genetic testing it will be impossible to know for sure. The best we can do, for now, is to identify probable HD cases through family connections to living sufferers and those that the disease has already killed. Through this approach we have identified and enrolled 568 kids at risk who are under 12 years of age (7% of the population).

Because of this high incidence, Factor-H must take a community approach to eliminate discrimination, improve housing, and boost living conditions for these families. Our social workers visit all the enrolled families regularly, tracking changes, and they bring food, diapers, and nutritional supplements, along with conducting many activities designed to improve quality of life. This is hard and difficult work, and we are in awe of the dedication of our employees and local volunteers who help us reach every affected member of these communities. Whether through our painting/art program, or through our caregiver efforts, Factor-H and Habitat LUZ bring hope, love, and a bit of much-needed fun to these families.

On Sunday June 2 we organized a concert by local musician Enrique Rincón Canaan, which took place in the grounds of Iglesia Renacer, the largest local church in Barranquitas. The Church has become a main collaborator in our quest to influence the local community. In this post you can see some images of Enrique’s performance in front of a crowd of several hundred people.

Visiting the patients and their families is one of the most meaningful aspects of what we do. We fight constantly to provide the social contact that these patients so desperately need, and we return home with a feeling of gratitude for all the love they provide us in return.

Thank you for reading, and for your support.


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