Dunia & Zoila – The Importance of a Support Group

By Danielle Duran Baron, Senior Communications Specialist

support group

PHOTO: The " Luz, Fe y Amor” (Light, Faith and Love) support group and children from the community.

I am told that we are going to participate in a self-support group meeting in La Ceiba, on the northern coast of Honduras. The group we are seeing today is in its early stages, therefore needs a more hands-on approach by ASONAPVSIDAH, or the National Association of People Living with HIV/AIDS, a CHF partner that leads a network of smaller associations of people living with HIV throughout the country.

I imagine we are going into an office, but this meeting will actually take place in someone’s house. Still, I imagine an urban setting, an apartment building and find it odd when the coordinators tell us they’ll meet us at the entrance of the neighborhood. After being in the car for a few minutes, I quickly understand why: there are no street names or house numbers, the neighborhood is a maze of small houses glued to one another.

After a few minutes, we arrive at our destination, Dunia Sandoval’s house. Our hostess is a 34-year-old mother of three who stopped working after the birth of her youngest child, Julio Cesar. She is also HIV-positive and coordinates the support group named “Luz, Fe y Amor” (Light, Faith and Love) and her house is the place where people living with HIV hold regular meetings with participation of those who may be interested in learning more about prevention and treatment.

HIV/AIDS is a very serious issue in this Central American country. According to the Honduran Ministry of Health, with 0.7 percent of the population estimated to be HIV positive, the country has a concentrated HIV epidemic, with specific populations showing significantly higher prevalence rates than the general population and a generalized epidemic on the north coast, where Dunia lives. According to the Ministry of Health, in December 2009, Honduras had 27,714 cumulative reported cases of HIV/AIDS.

Dunia asks us to come in and introduces us to the rest of the group, mostly friends from the neighborhood. “When I first moved here, about four years ago, very few people even talked to me. They would not come near me, they would not hug me or even drink out of my glass,” she explains with tears in her eyes. “I felt alone and isolated. I was depressed. Except for one neighbor, everyone else shunned me.”

Today, the goal of the meeting is to write the ground rules and establish the steering committee for the group. Zoila Gomez, acting coordinator for ASONAPVSIDAH, is here to facilitate the session. A young mother herself living with HIV, she knows about the importance of having a strong support group. She says that it was after participating in such a group that she decided she wanted to live.

In addition to their age – they are both 34 years old—the two young women have faced more challenges than most people their age. Zoila has been living with HIV for 17 years and has become a source of inspiration for many, like Dunia herself, who found out she was HIV-positive when she was expecting Julio Cesar, now five years old. Both of them were in shock when they first received the diagnosis, but since then have come to terms with their condition and live healthy and productive lives.

“For five years there was nothing I could do. I refused to believe I was HIV-positive. I did not want to talk about it, I did not want to think about it, and I just wanted it all to go away. But it didn’t,” recalls Zoila. The emotional shock had been enormous: Zoila found out she was HIV-positive when her husband fell ill and died shortly after that, at age 36. A few months later, she discovered her baby girl, now 17 years old, was also carrying the virus.

For the next few years, Zoila did not speak about her diagnosis and refused treatment, but when her health rapidly deteriorated, she knew she had to change – if not for her own sake, for her daughter’s. She needed help. In fact they both did.

The first step was to find a support group, where she could share her experiences, expectations and fears. “They saw me as a person and gave me the strength to move forward,” she recalls. “It is good to have access to medication but the best thing is to be responsible for our own health,” Zoila adds. And that’s exactly what she did; she took ownership not only of her health but of her own life. “One of the doctors I was seeing told me I could live a healthy life and urged me to try things I had never done before. He told me to climb a tree, and after I did that, I knew I wanted more,” Zoila explains, adding that since then, she has gone back to finish her high school degree and now is working on her bachelor’s degree in Business Administration. Her daughter, Ana, is also thriving despite the challenges she has had to face from a very young age. “She is very dynamic and in addition to being mother and daughter, we are friends,” the proud mother says. Ana is also an advocate for young people living with HIV and travels all over Central America sharing her experiences.

Much like Zoila, Dunia thinks the support group gave her a community to belong to. “In this group we have different people, all friends. We have people who are living with HIV, we have people whose loved ones are living with HIV and we have people who want to know more about how to protect themselves so they do not become infected,” she explains. “We all come here, we all talk and share our concerns and learn from each other, and that has made things a lot easier for me. Now, my neighbors don’t fear me. They see me for who I am and they know better than to think they can get sick if they hug me. I think that by coming to the support group they have learned a lot, as have I.”

In May 2008, CHF Honduras became the principal recipient for the Global Fund for AIDS, Tuberculosis and Malaria and has partnered with several local organizations, such as ASONAPVSIDAH, to address many of the country’s needs. From May 2008 to April 2010, ASONAPVSIDAH has worked to strengthen 58 support groups and conducted 25,977 home visits all over the country. The home visits are one of the strategies ASONAPSIDAH uses to improve the quality of life of those living with HIV/AIDS.

Last year, each month, facilitators visited 1,160 people in their homes teaching patients about the importance of adhering to their antiretroviral treatment and working with those who have stopped treatment so that they can resume their routine. ASONAPVSIDAH staff also offers counseling, nutrition education, patient referral and follow-up.

ASONAPVSIDAH gathers approximately 950 people infected and affected by HIV. The organization is present in 67 municipalities, in 14 out of the 18 departments of the country.