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Gaucher Disease patient lives positively

Rachel Raditsebe

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Loago Bagopi

With his high-spirited smile and infectious laughter, it is hard for one to wrap their mind around the fact that Loago Bagopi is suffering from a terminal affliction.The 21-year old native of Sefophe is suffering from a painful and rare genetic disease called Gaucher Disease (GD) but he is determined to live the best life he possibly can while he still has it.

GD is a rare inherited disorder caused by the body’s inability to make an enzyme, glucocerebrosidase, which breaks down fatty substances in the body. This leads to build up of these substances in many tissues of the body, including the bones, organs, and bone marrow.

The disease affects vital organs, and symptoms include developmental delay, seizures, dementia, blindness, enlarged liver and spleen, pulmonary and cardiac problems and bones that grow abnormally.

The disease is named after the French physician Philippe Gaucher, who originally described it in 1882.Bagopi’s health problem started when he was six years old and as he grew up and became an adolescent, the disease grew with him.

“I was very thin with a swollen tummy and I had to give up playing one of my favorite sports in the world, football, because my legs hurt.I was always tired and even if I had a small bump I would bleed excessively,” he explains.

The pains were not only in his knees, but also in the femur, hips, and back. His health problems became more frequent and aggressive and also meant he could be in bed for up to two months at a time.

With all that, Bagopi still managed to get a grade B for his junior secondary school leaving examinations, but unfortunately couldn’t go on with school because of his health problems.
It was only when he was 17 that he was finally diagnosed with Gaucher. He is one of the three confirmed cases of GD in the country.

“It was confusing for me that I was constantly going to doctors, constantly getting MRIs, x-rays, density scans,” recalled Bagopi. “I didn’t know what to look forward to”.
Once Bagopi was diagnosed with GD, the family received another shock.

There was nothing that doctors could do for him because the treatment is so expensive. At a cost of about P104 000 every two weeks, this condemns patients with rare diseases like Bagopi to a death sentence, according to Consultant Pediatrician at Princess Marina Hospital, Dr Joel Dipesalema.

“Cost of treatment is high because demand for medicines is low, and companies have to charge higher prices to recover cost,” he explained. Even more frustrating, he said, is the time patients take before they can be diagnosed.

Dr Dipesalema, explains, “A lot of patients are misdiagnosed and they go from one specialty to another, sometimes for years and even decades while they suffer from disabling complications of their disease.

It causes a tremendous sense of isolation and chronic pain, disability and loss of quality of life. So there is a huge burden of suffering that the patients experience on their path to having the correct diagnosis. The worst thing is not to know. Knowing what’s wrong, you have conquered more than half the battle.”

There are no specialized labs essential for diagnosis of most rare diseases in Africa and so all diagnosis are done in Europe. He said Gaucher disease occurs in three different forms, referred to as types 1, 2, and 3. Type 1, which Bagopi suffers from, is the most common form, accounting for 90% of known cases.

A delay in diagnosis or lack of treatment leaves the patient at risk of irreversible damage, which Dr Dipesalema said eventually leads to loss of body function and a painful death.Some of the biggest challenges when living with Gaucher, Bagopi said, include continuous fatigue.

“The pain comes and goes and sometimes makes it impossible to get out of bed, but the fatigue is always there and it is also immobilizing at times. A lot of times I’m just too tired to do anything. There is something about this type of being tired that is painful. It makes life impossible,” he said.

And then there are the constant stares he gets from the public every time he leaves the house because of his big stomach.“At one point I became really shy and didn’t want to mingle with anyone who was not family”. But he is over that now because, “being alive is too precious to waste it on obsessing what people think and say about you!”

With his eyes focused on enjoying his life the best way he can, Bagopi hopes that by sharing his story, other people battling the debilitating illnesses would be inspired to not focus on their negative circumstances and live their best lives.

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Botswana urged to sign Maputo

Keletso Thobega

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Botswana is one of the five countries that have been advised to sign the Maputo Protocol. Botswana, Egypt and Morocco are the only three African countries that have not signed this Protocol. Adopted in 2003 and implemented in 2005, the Maputo Protocol is a ground-breaking protocol on women and girls’ human rights, both within Africa and beyond.

It compensates for the shortcomings in the 1981 African Charter with respect to women and girls rights. It includes 32 articles on women and girls’ rights, and also provides an explicit definition of discrimination against women, which was missing in the African Charter.

The Maputo Protocol defines discrimination as “any distinction, exclusion or restriction or any differential treatment based on sex and whose objectives or effects compromise or destroy the recognition, enjoyment or the exercise by women, regardless of their marital status, of human rights and fundamental freedoms in all spheres of life.”

The State of African Women Report 2018 stipulates that more still needs to be done to implement laws and commitments to the rights of women and girls in African societies. While there has been significant improvements in addressing issues affecting women and girls over the years, the report notes that commitment to girls and women’s right is still lagging behind.

The report highlights that:
“Three in five countries in Africa do not criminalise rape, young women aged 15-24 in sub-Saharan Africa are 2.5 times more likely to be infected by HIV in comparison to men in the same age group, more than half of maternal deaths worldwide occur in sub-Saharan Africa and that gender based violence and sexual assault still affects women more”.

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Mama Rampa, the Good

Yvonne Mooka

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NOBLE CALLING: Martha Rampa on a mission to rescue the underprivileged

Martha Rampa, project manager at AAP Home Based Care and Family Life Programme quit her nursing job over ten years ago to attend to the needs of orphans, poor and sick.

AAP has 3119 orphans and underprivileged children from South East, Kweneng, Kanye and Kgalagadi districts. The Non-Governmental Organisation aims at supporting, providing food, clothing, shelter, education, nursing care, counselling and supporting destitute, terminally ill patients and orphaned children.

According to Rampa, the thrust of the practice is the link between the patient and the clinical management services. “It is a person-centred approach, which ensures that patients receive the appropriate service in a supportive and effective manner. Destitute and orphaned children have over time become integral part AAP programmes,” she said.

Last Saturday, she organised an appreciation dinner for donors. It was a colourful event where beneficiaries had also come to testify about the way their lives have changed since they were enrolled.

One of the young girls said that she had given up on life as she was from a poor family. The under 15 girl said that through AAP, she managed to continue and is exceling at school. A young man under 20 said that he was moved from a settlement where he could not focus on his studies because of his family background.

AAP put him through a different school that has boarding. “At AAP, we call her mama Rampa. She is our mother and we are so blessed to have her,” he said at the event in Gaborone.

The primary aim of AAP is to rehabilitate and develop children in difficult circumstances such as orphaned children, street children, economically poor and socially oppressed children and work for the eradication of child labour and child exploitation.

Rampa said the vision is to help and give many more children a real and loving home which helps them to live and grow up to be free, healthy and independent individuals; to influence behavioural change of individuals, especially those in the realm of sex and family life and to introduce a change that will bring a transformation, which alleviates the impact of HIV/Aids infection and stops the spread of the virus within the community.

She said there were local companies that had committed themselves to giving the children food after every two weeks. Through her gift of counselling, she also assists with providing emotional and spiritual support including counselling to orphans, destitute, terminally ill and the poor. She also prays for them.

She said that since the project started in 2000, the focus was on the care of HIV/AIDS patients. Volunteers were trained to take care of terminally ill patients in their homes. “Due to lack of funds in supporting the volunteers, for three years only 45 were full time serving in the project with great results.

“A networking relationship was established with Ministry of Health/AIDS department and Ministry of Labour and Home Affairs as well as other NGOs like BOCAIP, Clinics around Gaborone and Church leaders. We effectively communicated our mission to our leaders like Counsellors, Members of Parliament and diKgosi in the areas where we are operating,” she said.

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