A survivor shares her story of living with HIV for 24 years
Flavia Kyomukama speaks to during the interview.
Every day, her breakfast tray comes with a pill she prefers to call a starter. But in fact, it is an anti-retroviral drug that Flavia Kyomukama, 46, has to take daily. Besides the morning pill, Kyomukama also has to take two other pills in the evening.
Kyomukama is one of the long-term survivors of the HIV/Aids epidemic. The mother of three says she discovered her status in 1989, after losing her newly born twins under unclear circumstances.
She had suffered from tuberculosis and after seeking treatment at a lower health facility, she was referred to Mulago hospital.
She suspects the twins could have died of HIV-related causes, although that was not confirmed.
“HIV was not common at the time and no one considered taking a test before marriage or during pregnancy,” Kyomukama says.
Before she could be treated for TB at Mulago, the doctor advised her to take an HIV test, since it was one way many patients with the disease were identified then. The results were positive.
But there was neither counselling services nor HIV treatment at the time, and all the doctor did was give Kyomukama TB drugs, which she would take for eight months.
By the time she completed treatment, Kyomukama was pregnant again. When she broke the news to her husband, he offered his full support. Kyomukama’s husband did not know his status at the time because testing was for people who already looked sick, although he would also test positive a few months later. She gave birth to her now 23-year-old daughter in November 1990.
She explains that the support from her husband and family, and availability of information in the absence of HIV drugs at the time, helped her to live a positive, healthy life.
“I strived to avoid things that would affect my immunity although I did not look sick,” she says. Even without treatment services at the time, Kyomukama did not suffer stigma because she did not present with any signs and symptoms in the first 10 years of living with the virus.
“It was only my husband who was aware of my status. I told my parents after seven years,” Kyomukama remembers.
Family support
“When I told my dad about my status, he simply said it was okay, and that I would live a long life. I do not know if what he said that to make
me feel strong, but to date, that statement has kept me going,” Kyomukama states.
In 1999, when she gave birth to her second child, Uganda had already launched the prevention-of-mother-to child transmission (PMTCT) programme, and Kyomukama became one of its early beneficiaries.
At the time, it was a single dose therapy that would be given to an expectant HIV positive mother on the onset of labour.
After that, the baby would be put on ARVs for another three months, and encouraged not to breastfeed.
But Kyomukama’s life took another turn in 2001, after separating from her husband. The separation took a toll on her. She became weak and lost weight.
However, luck would come her way again in 2003, after being selected as a participant on a development of anti-retroviral treatment project trial that would see several HIV positive people regain hope for life.
“I was number 60 on that trial, out of 2,000 people living with HIV who had been enrolled under the programme. We were given ARVs that comprised of three pills which we would take every day,”says Kyomukama
To date, it is the drugs that Kyomukama continues to take. The rather slender mother of three considers herself a fighter with zeal to ensure the rights of people living with Aids are protected and respected.
Even though Kyomukama remarried in 2005, she says she has not infected anyone with the virus since establishing her own status.
“When you find out about your status early and choose to live positively and healthy, then you prevent further transmission of the disease,” she adds. Her current husband is also HIV positive.
While doctors recommend that couples living with HIV/Aids should use condoms when engaging in sexual intercourse, Kyomukama says it is usually a difficult practice to adhere to.
“My partner and I chose to adhere to our treatment to the level that both our viral loads are currently at an undetectable level. We also agreed to practice faithfulness. At this point we feel safer even without the condom,” she says.
After giving birth to her third child, Kyomukama, who was a teacher then, delayed to report back to school and she was replaced. She tried to look for another teaching job but was not successful and decided to quit the profession altogether and go into activism, fighting for the rights of people living with HIV/Aids.
Currently, she is working as the national coordinator of the Global Coalition of Women against HIV/Aids.
The daily pill
One of the biggest challenges for people living with HIV/Aids is taking medication every day. “The drugs weaken the body because they are strong and if your immunity is already weak, you can easily give up medication,” notes Kyomukama.
“I know how to live positively because I have a lot of information on nutrition. I also follow the doctor’s advice religiously,” says the teacher-turned HIV/Aids activist.
Of the group of 2,000 patients enrolled on ART in 2003, Kyomukama says she is one of the few who have not experienced side effects with their medication.
“I get general body weakness. I suffered this for three months. Some people get rashes and other skin problems, others suffer diarrhoea, some would vomit constantly,” she further states. “At times I feel like giving up the drugs but then I remember how far I have come, and how many of the people with whom we enrolled have since passed on,” she says. Kyomukama’s children have played a key role in ensuring she adheres to her medication because they are always at hand to remind her to take the drugs.
“It is more workable when you are open to your family. They support you. Adherence will be very difficult in cases where one of the partners takes the drugs in hiding.”
Kyomukama occasionally gets joint pains, nerve stinging, and burning sensation, but quickly consoles herself that at the end of the day, all medications will have side effects if taken over a long period of time.
“I have friends who have been crippled, those whose mental health has gone down, others have become diabetic as a result of the drugs,” she notes, quickly adding that, she has not been affected by such effects partly because of strict health lifestyle that she follows, and the strict adherence to treatment as recommended by the doctors.
Diet
Kyomukama says she also pays attention to the kind of food she eats, and ensures that she has enough rest since some of the side effects from the drugs can be triggered by stress. But for the body to build long-term resistance to side effects, Kyomukama says a person needs to know their status early enough in order to follow a healthy lifestyle.
Since 2007, her viral load has remained at what doctors term an undetectable level, meaning that the viral loan cannot be traced in her blood tests.
But most importantly, Kyomukama says accepting her status and having a positive outlook to life is what keeps her going every day.
“I prayed to God and asked for many more years in life. He gave me 20 years with HIV and I am still going strong. Who cannot be grateful for that? ” she asks.
