Young diabetics tell stories of courage, hope and despair

24Apr 2016
Lucas Liganga
Guardian On Sunday
Young diabetics tell stories of courage, hope and despair

A STORY is told of a diabetic young man who lost his employment after he had injected himself with insulin because the management suspected he was on drugs.

Hawa Mwamuhanga

The poor young man was suffering from Type 1 diabetes, an autoimmune disease where the body’s immune system attacks and destroys healthy body tissue by mistake.

Type 1 diabetes is an autoimmune disease where the body’s antibodies (defence soldiers), instead of attacking the ‘outsiders,’ i.e. infection from outside the body, attack the body’s internal system. In Type 1 diabetes, beta cells of the pancreas which produce insulin get destroyed or damaged.

Diabetes Mellitus can occur either because there is no insulin or less insulin in the body or there is excess of it, but which is not working on the body cells (insulin resistance).

The young man who was diagnosed with the disease since his primary school lost his job as he was trying to save his life by injecting himself with insulin.
He is among 2,000 young diabetics in Tanzania where there are recorded new cases of 150 young diabetics every year.

Globally, the incidence of Type 1 diabetes among children is also increasing, particularly in children below 15 years.

It is estimated that about 79,000 children under the age of 15 are developing Type 1 diabetes annually worldwide. Today, it is estimated that 497,000 children have Type 1 diabetes worldwide.

Unlike Type 2 diabetes, Type 1 diabetes is not related to lifestyle or being overweight, and there is no known way to prevent it.

About half of children suffering from Type 1 diabetes live in resource poor settings, often without the necessary diabetes treatment facilities.

“These children have high mortality rates, and in some sub-Saharan African countries their life expectancy is less than one year after diagnosis,” says Herieth Mganga, a programme manager with Changing Diabetes in Children (CDIC).

But a number of young diabetics in the country, such as Rukia Mbwana, a Form VI student at Tambaza Secondary School in Dar es Salaam, are coping with the disease with courage and hope, and sometimes with despair like the young man who lost his job.

“It all started when I was eight. It was a shock to my parents when the doctor informed them that I was diabetic,” says Rukia, now aged 21, from Same district in Kilimanjaro region. She was diagnosed with Type 1 diabetes in October 2003.

She adds that she received the news with stress and it was hard to accept as she lacked awareness about the disease.

She says her parents thought she would die soon because people said diabetes was a killer disease.

“Most of the time my mother used to cry as she thought I was going to die soon. It was hard for her but she kept trying to accept the reality and stop the crying,” says Rukia.
But with the help of doctors and educators, she says, she learned and accepted the reality to live with the disease.

“Now my life is better. My diabetes is manageable. I have no more complications and I am enjoying my life,” says Rukia, boasting that she was looking forward to sitting for her Form VI examinations later this year and passing with flying colours.

“I am studying Physics, Chemistry and Biology (PCB) because I want to become a medical doctor. Diabetes has pushed me to cultivate interest in medicine,” she says, adding:

“I have accepted diabetes in me. I am happy and am still me. I have peace of soul in me and I am strong and forever I will be.”

Like Rukia, Anita Bulindi, also aged 21, who was diagnosed with Type 1 diabetes in October 1999, talks about life with diabetes at school and how it wasn’t until she accepted her condition that things started moving in the right direction.

She says she was diagnosed with Type 1 diabetes in 1999 at Hindu Mandal Hospital in Dar es Salaam when she was four years old, adding that she started school when she was three years old.
“I was already going to school when I was diagnosed with the disease,” she remarks.

Anita says in 2002 she moved from Hindu Mandal Hospital to Muhimbili National Hospital (MNH) where she received insulin, a glucometer (for measuring sugar in the body) and all the necessary glucose-monitoring facilities free of charge - thanks to the International Diabetes Federation’s (IDF) Life for a Child Programme.
She says it was very difficult to manage diabetes when she was young and at school.

“I didn’t want to take care of diabetes. I wanted to eat biscuits like all the other children,” she adds.

She says she had a hard time with diabetes until she reached Standard VII when she started opening up about her condition.

Anita explains that when she began to accept the disease she was able to better learn how to control it, adding that opening up to people made a big difference, and around the same time, education, awareness and access to better doctors and clinics improved her acceptance of the disease.

“All my classmates began to understand my disease when I finally told them about my diabetes, and afterwards they became more supportive,” says Anita, now a second year student at the Mass Communication School of Journalism of the University of Dar es Salaam.

“My parents trust my ability to make decisions on my own now, but they will never stop worrying about me,” she says, adding that she was looking forward to being independent.

However, Anita recalls one incident in which their housegirl quit her job after she had seen her injecting herself with insulin.

“She (the housegirl) thought I was a drug addict,” she says.

Hawa Mussa Mwamuhanga, aged 26, was diagnosed with Type 1 diabetes in 2001. After she became weak she went to eight different hospitals but none of them managed to correctly diagnose her with the disease.

She says she has gone through some trying moments as a young diabetic girl, including years back when one of the schools refused her admission simply because she had syringes for injecting insulin.

“The school administration told me that the syringes could be a source of spreading HIV to other students,” says Hawa, adding that another high learning institution also refused to admit her because it did not allow her to bring along her fridge for keeping insulin.

“The institute did not allow the use of personal fridges to save electricity,” says Hawa. However, she was later admitted to the institution.

Apart from these incidents, Hawa says life goes on as she has been able to cope with the disease.

Aniceth Muchunguzi, a first year student at the Muhimbili University of Health and Allied Sciences (MUHAS), says corrupt ideologies and superstitious beliefs could lead to death of innocent children due to delayed or being deprived the right to medical examination and specialized treatment.

Aniceth, aged 19, was diagnosed with Type 1 diabetes in 2013 when he was in Form V at St. Joseph’s Cathedral High School in Dar es Salaam.

“On getting the news that I was diabetic my mother started crying but thanks to Dr Kaushik Ramaiya and Sr. Mary of Hindu Mandal Hospital who gave my mother awareness education on the disease,” says Aniceth.

Since then Aniceth says he has managed to control his diabetic condition and he was looking forward to completing his studies at MUHAS.
And George Kwayu, a first year student at the Institute of Finance Management (IFM) in Dar es Salaam, was diagnosed with Type 1 diabetes in February 2001 and he has lived with the disease for the past 16 years.

“When I was diagnosed with the disease my mother and my grandmother said it was impossible for a young child to have diabetes,” says George, adding that they later on accepted the situation, enabling him to cope with the disease.

However, he says, he was stigmatized by his fellow pupils in primary school, who called him a sick person unable to do anything.

“They stopped me from playing football, saying I was weak, and when there were trips organized by the school they asked me to stay at home because I was sick,” says George, adding: “But I managed to fight on and I can now comfortably state that my future is bright.”

Rukia, Anita, Hawa, Aniceth and George are members of a nascent Tanzania Diabetes Youth Alliance which is in its formative stage.

The Alliance feels that young diabetics at times face isolation, rejection and stigmatization, especially from their age mates who consider them as weaklings and persons with disabilities.

“Difficulty in reading due to impaired vision is a challenge some of us face as a result of prolonged uncontrolled high blood glucose levels,” says a statement by the Alliance.

The statement adds that poverty, at family level, deprives most of them the chance to afford adequate but also expensive life-long insulin medication, specialized diabetic care facilities, including glucometers and refrigerators for optimum insulin storage and proper meal schedules.

“There are evident cases of discontinuation or freezing of studies at school as a result of diversion of schooling finances to cater for medical requirements,” they say in the statement.

They appeal to the government to ensure reliable diabetic health facilities and committed health personnel were available.

They also ask the government to set aside specific funds in favour of those incapable of affording their rightful diabetic health services.

“It is therefore crucial to practically support us to foster a comfortable livelihood, henceforth invest in the future of controlled diabetes as we live to achieve our dreams,” they say.

Dr Kaushik Ramaiya, a Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital and TDA Secretary General, said that over the past 10 years TDA, in partnership with Ministry of Health, has made major strides in early diagnosis and management of children with Type 1 diabetes.

He said TDA has also been in the forefront in ensuring increased awareness within the communities, in the schools where the children and their parents are.

“The biggest challenge is ensuring that these children not only get continuous supply of insulin (which is life saving for them), but also facilities for monitoring blood glucose and attending diabetic clinics regularly to avoid short term and long term complications,” said Dr Kaushik.

The Minister for Health, Community Development, Gender, Elderly and Children, Ms Ummy Mwalimu, said currently Tanzania has 60,000 adults and 2,000 children who are known to have diabetes.

“It is not that the number of children with diabetes has increased, but previously there were no enough mechanisms that were put to find children with the problem. Some of them were dying before even being diagnosed with this problem,” she said in an email.

Ms Mwalimu said her ministry has put in place a number of measures aimed at controlling the disease, including a strong surveillance system, conducting diabetes screening campaigns country wide and provision of diagnostic equipment, supplies and medication like insulin free to government health facilities.