The quantity of tragedy that Tifanie Collazo has experienced in her 45 years is exceeded only by the number of pills she takes to mitigate one of those tragedy’s effects.
In April 1993 Collazo, who had a 4-year-old daughter at the time, learned that she tested positive for the Human Immunodeficiency Virus (HIV). She contracted it through a male who was aware of his status as a carrier, but chose not to disclose it.
“It was like, ‘Why am I even going on? My life is over,’” Collazo said. “Who is going to take care of my baby when I die?”
With help from a case manager and a Lake County support group that evolved into an Ashtabula County group, Collazo was able to move beyond the shock and get the help and support she needed.
“My mom and my husband are my biggest supporters,” Collazo said. “My family is extremely supportive.”
Unfortunately, that’s not the experience of many persons who test positive. They may be afraid to tell their family and choose to stay silent on the subject. Or if they do disclose their test results, they may find themselves shut out from familial contact.
In the spring of 2011, Collazo and two other persons interested in the welfare of Ashtabula County residents with HIV/AIDS, started a support group for county residents. The group meets the first Monday of the month at the American Red Cross office on Center Avenue. She said it is a very informal gathering, and while she and two others guide the discussion, “it’s not the three of us, it is everybody’s group.” There are no professional members or formal presentations and speakers. It’s just two hours of sharing ideas, concerns and, most important, laughter.
“You don’t go out of here without laughing,” Collazo said. “It’s upbeat. It’s not a crying, sad group.”
Collazo has had her share of the latter. The test that showed she was positive was ordered as a result of being admitted to a treatment center for addiction. Her daughter was killed by a drunk driver on Woodman Avenue in 2003. She is kept alive by a cocktail of medications, some 45 pills, that would cost her more than $5,000 monthly if it were not for an assistance program.
“(HIV) breaks down your body,” she said. “I’ve had multiple surgeries and complications, I have a pacemaker,” she said. “I have to be very careful around sick people because my immune system has been compromised.”
Most recently, Collazo learned she has diabetes.
Nevertheless, she is living a full and happy life. Her husband of eight years is negative and Collazo herself is classified as “undetected” — similar to a cancer patient who is in remission.
Nevertheless, if she were to stop taking the drugs, many of which are to offset the side effects of the seven anti-viral drugs she takes, her health would rapidly deteriorate.
“I would start to get really sick,” she said.
Collazo said that newly diagnosed patients can take the more modern drugs, which have fewer side effects and come as a single pill. But because she has been taking medications for so many years, her body has an immunity to the modern agents used to hold the incurable condition in check.
Like many people, Collazo had always thought of HIV/AIDS as being a “gay person’s disease,” but her test results ripped that myth in half. She’s come to realize that any person can test positive, and she and the support group members stress the importance of being tested.
A home test costs about $50. Area health departments occasionally offer free testing, and the support group is looking at sponsoring a testing event in conjunction with the local American Red Cross chapter. Results are private and known in about 20 minutes. Collazo said there are about 52 people in the county who have tested positive.
She said finding the people who need to be involved in the group is difficult because of the health privacy laws. Collazo wants any person who has tested positive or has a loved one who is positive to get involved in the group. There is no charge.
The group will hold a pot-luck picnic from 11 a.m. to 2 p.m. at Lake Shore Park on July 14. Collazo said it will provide a neutral opportunity to learn about the group and meet others with the same issues. To encourage confidentiality, the exact location will be released only by calling her at 789-0557, or through email, email@example.com.
The next support group meeting is at the American Red Cross office from 5 to 7 p.m. Aug. 6. They typically have 10 attend. Collazo said topics that most frequently come up at the support group meetings are medications, side effects and acceptance of the disease.
“We’re all here for their support,” Collazo said. “We live, laugh and love.”