It is a reality that our patients with HD in Venezuela are subsisting in an environment of great precariousness, not only due to their economic limitations but also because specialized health care is inaccessible in Venezuela, since the national public system does not operate properly. Understanding this harsh reality is sometimes difficult for those who look at us from afar, because it is automatically assumed that the State is the guarantor of an inalienable primary right such as that of health.
This led Factor-H to consider the possibility of maintaining a free and constant neurology consultation for our patients… and the opportunity arose through the signing of the agreement between Habitat LUZ – representative of Factor-H in Venezuela – with the Salesian Ladies of the State of Zulia in September 2023 with the presence of Factor-H and our team from Colombia and the entire team from Venezuela. It was a day of great wonders…
The consultation began on November 22 and will take place once weekly. Since its start, it has been operating without fail and Dr. Aura Pernía, the movement disorder neurologist in charge of the consultation, has so far seen fifteen (15) patients who were in a critical situation or were yet to be diagnosed by a professional. In the waiting area, we have had the unique moment of talking with the patients and their families and everyone is extremely grateful for this great opportunity, because they are aware of the importance of neurological follow-up in the case of HD. This service complements other medical activities we carry out in both San Luis and Barranquitas every 3 months, and provides continuous neurological care for the more than 100 symptomatic individuals in San Luis and neighboring areas in Maracaibo.
Also, with some limitations, we offer neurological and psychiatric medications that are extremely expensive, &and therefore inaccessible, for our patients. We put our trust in the solidarity and support of organizations that can donate them… this is a call to you, our friends and supporters, who might be in a position to help us access medicines and nutritional supplements to improve their health conditions. If you want to help, please get in touch by emailing firstname.lastname@example.org or contacting me directly at email@example.com
Lic. Miriáyela Fernández, our social worker in San Luis and neighboring communities, identifies patients for the consultation and accompanies them, along with their caregivers and family members, in the waiting area before seeing the neurologist. This support is very important and makes the family feel accompanied during the visits. The team at the “Don Bosco” Outpatient Clinic of the Salesian Ladies, close to the community of San Luis where most of our patients come from, does its “magic” by providing warm and humane care in a physical environment not only adequate but totally enjoyable for everyone.
We, the Habitat & Factor-H team in Venezuela feel honored by this extraordinary opportunity… since it has been a dream that became a reality after a long time.
Many thanks to all of you that make this possible through your contributions to Factor-H!