“I hardly slept at night because every 20 minutes, I would have to rush to the toilet to urinate,” says Edith Prudence Mukantwari.
In 2005 at the age of 16, during her Senior Three, Third Term studies at Naalya Senior Secondary School in Bweyogerere, Mukantwari noticed she was often thirsty, urinated frequently and wanted to eat all the time.
“I wanted to drink water all the time. There were occasions I would take a whole five litre jerrycan and would only stop after realising that my stomach was ballooning,” she says. Adding that her appetite also increased immensely and whenever her friends had leftovers, they would pass them to her.
The irony, however, was that despite the fact that she over eating, she was drastically losing weight. “Other students called me lucky because here I was eating all the time, yet, not putting on any weight,” she says. Mukantwari also remembers frequently getting vaginal infections, including candida that often forced her to seek treatment from the sickbay.
“I was a frequent patient at the sickbay often lamenting my troubles to the nurse. I would tell her about the infections, over eating, over drinking and frequent urination but, for some reason, she did not carry out any other tests and only treated the infections,” Mukantwari says.
In the end, the endless health issues caused a lack of concentration in class. “I had no energy and was constantly putting my head down on the desk to sleep, a habit that often irritated the teachers,” she says.
One afternoon, while talking to a friend about her troubles in the dormitory, another female student overhead their conversation and told Mukantwari that she might have diabetes because these signs were the same signs her mother exhibited before she was diagnosed with the condition.
Mukantwari went back to the school nurse and asked her to carry out tests. “She looked at me in disbelief because she believed that there was no way a girl my age would be suffering from diabetes. However, she said she would closely monitor me for two weeks,” Mukantwari recalls.
During the two-week period, Mukantwari’s mother paid her a visit and was horrified when she noticed her daughter’s dramatic weight loss. Concerned, she asked for permission to take her for further medical tests, which were carried out at Middle East Hospital and Diagnostic Centre in Bugolobi, a Kampala suburb.
The tests revealed that Mukantwari had Type 1 diabetes and she was given medication which she adhered to until completing her O-Level. In the meantime, she gained a lot of weight.
However, when she joined Senior Six at Gayaza High School, Mukantwari stopped taking her medication which she falsely believed was now the cause of her weight gain. Then, the symptoms resurfaced, which forced her mother to take her to a doctor that specialised in treating diabetes. “He carried out further tests, which confirmed the previous diagnosis. He, however, trained me on how to check my blood sugar levels without necessarily coming to the hospital. He also taught me how to administer the insulin injections,” she says.
With this training, Mukantwari was now equipped with knowledge of how to help herself when the doctor was not around. Her testing devices mostly compromise of a blood glucose metre, glucose test strips, lancets, and alcohol swabs.
In 2009, she enrolled for a Bachelors in Food Science and Technology at Makerere University. Her parents continued giving her pocket money which she used to buy medication. It was during her third year that her then boyfriend, a medical student at the same university sold her the idea of seeking help from the changing diabetes in children project under the Mulago Paediatric Diabetes Clinic that was assisting children and a few adults get treatment.
“I went to the clinic and received a lot of information on my type of diabetes and how adult patients can help themselves. I was also given free medicine, free strips for testing my blood sugar levels and free injections for administering the insulin,” she says.
The free medication from Mulago lifted a huge financial burden off Mukantwari’s shoulders. She eventually graduated in January 2014 and in October of the same year went to pursue her Masters in Public Health and Food Safety at Sokoine University of Agriculture in Tanzania on scholarship.
Life in Tanzania
Studying in Tanzania meant that Mukantwari could no longer access the free services at Mulago hospital. Besides, the clinic had brought to her attention that it would no longer provide free medication to her since she was growing older, yet, their services were majorly for younger patients. But in Tanzania, the health insurance accorded to her was very helpful in enabling her carry out frequent tests as well as purchase insulin and injections. Meanwhile, she battled hypoglycemia, a complication in diabetes where there is a big drop in blood sugar levels.
But she persevered and managed to complete her Masters in January 2017 and returned home. Since her condition required close monitoring, Mukwantwari had to move back home where her parents would closely monitor her.
The book that changed her life
Upon her return, she read a book titled, The Diabetes Solution by Dr Richard Bernstein, a physician, which completely turned her life around.
“It contains details about diabetes including how insulin works, when to check blood sugar levels and how different foods affect your blood sugar, among other things,” she says, adding, “It also has a compilation of stories from patients suffering from type 1 diabetes which are very inspiring and helpful to other sufferers.” It was after reading the book that she and another colleague were compelled in 2018 to start African Diabetes Alliance, a non-government organisation, aimed at educating and sensitising patients living with the disease and advocate for access to better treatment, especially in schools.
Dr Richard Lukandwa, a physician with expertise in diabetes at Norvik hospital, says it is important to go for thorough medical-checkups from time to time and also test for diabetes. The tests are vital for those who have a history of the disease in their families. The illness is always managed better by medical professionals once discovered early. “Patient education is very important. Patients need to be disciplined in their lifestyle choices as well as adhere well to their medication,” he says.
Her health is still her priority. Everyday, she checks her blood sugar levels every two hours. “If I find that the blood sugar levels are high, I quickly normalise it by injecting myself with insulin, an injectable hormonal medicine,” she says, adding, “When I check and find the blood sugar levels are low, then, I eat or drink something such as juice, cake or any other sweet snack to help normalise the sugar levels.” With diabetes, Mukantwari says, she has learnt to be her own second doctor by understanding and attending more to the needs of her body.