Joseph Kimbowa, 23, remembers running around Villa Maria, Masaka, chasing after an old bicycle tyre.
With a stick, he would push the tyre and run until his little, sturdy legs were exhausted. His legs were sturdy, he emphasises. He would look at them and they reminded him of a footballer’s.
His arms were bulky too, like a body-builders. He maximised his athletic frame. Other than chasing after bicycle tyres, he played football and engaged in athletics.
BEGINNINGS OF MUSCULAR DYSTROPHY
But then, mysteriously, his strong beautiful legs started to betray him.
“I would fall whenever I would attempt to run,” he says.
His family was concerned. Why would a seemingly strong and healthy boy fall while running? He said he felt that his muscles were weaker, and could not properly support him. But he could still run small distances at slow speeds, couldn’t he?
He couldn’t. Doctors and herbalists were consulted and he received various treatments.
“They didn’t help me. I only started to feel worse. My bones were aching, alongside with me feeling increasingly weak.”
He soon dropped out of school. Little schoolboys thought his yet-to-be diagnosed condition was funny. They pushed him so he could fall, to their delight.
Kimbowa was not happy with their behaviour; so, he dropped out of school.
DIAGNOSED IN KAMPALA
A nun, wondering why Kimbowa was out of school, was told he was ill. She sponsored his trip to Kampala, where he was diagnosed with muscular dystrophy. His sister, Joslyn Nambatya, weeps when she talks about the doctor at Chesire Home, Katalemwa who hinted at serious trouble.
“When we got to Katalemwa, he [Kimbowa] was happy. He saw children being fitted with metals in their legs and said ‘I am going to be fine, baaba [big sister]. I will get those metals and I will be fine’,” Nambatya recalls.
The doctor, however, suspecting muscular dystrophy, said that Kimbowa might never be cured and he would likely die a young man.
“He was speaking English and I didn’t think he [Kimbowa] understood him. But when we left, he was sad, saying that he had heard the doctor say he would never be healed,” Nambatya says.
She breaks down sobbing, nine years after being told her brother would never heal.
“Please call me back later,” she requests between sobs.
When called later, Nambatya, a mother of two, worriedly asks: “Do you think my son will get muscular dystrophy?”
She pauses, as if she is chewing on some unpleasant information.
“I was told that the condition is passed from mothers to their sons. That us [girls] we are carriers. But the boys! They suffer. I have a son and daughter. I wonder whether my son is safe.”
MUSCULAR DYSTROPHY
Dr Justus Byarugaba, a paediatrician and nuero-physician who has worked with Nakasero hospital, confirmed Kimbowa’s muscular dystrophy. He asked to study Kimbowa’s family as Kimbowa has maternal cousins with the disease.
“He wanted to do biopsies but I had been advised against them. I refused. I took my brother to Kampala School of the Physically Handicapped thereafter,” Nambatya says.
UK’s National Health Services (NHS) defines muscular dystrophy as “a group of inherited genetic conditions that gradually cause the muscles to weaken.”
Seven types of muscular dystrophy, including duchenne, myotonic, facioscapulohumeral, Becker, limb-girdle muscular dystrophy, oculopharyngeal and Emery-Dreifuss, are listed by the organisation’s website.
The condition is caused by mutation of genes “responsible for the structure and functioning of a person’s muscles. These mutations cause changes in the muscle fibres that interfere with the muscles’ ability to function. Over time, this causes increasing disability,” the website says.
Nambatya’s fears for her son’s vulnerability are not far fetched.
“Muscular dystrophy is often inherited from parents,” Dr Enoch Kawalya of CORSU, a facility that treats disabilities, says. “I recently saw a whole family [of boys] with the condition.”
One prominent pastor’s sons are all said to have died as a result of Duchene muscular dystrophy. As this story might have shown, boys seem to be more affected by Duchene muscular dystrophy, which is sex-linked.
According to the NHS, this is because “females have two copies of the X chromosome [and] they are less likely to develop an X-linked condition because the normal copy of the chromosome [from the parent without muscular dystrophy] can usually compensate for the altered version.”
Muscular dystrophy is said to be uncommon in Uganda.
“We see one to two patients with muscular dystrophy every three weeks,” Kawalya says.
Duchene muscular dystrophy, which Kimbowa suffers from and is said to be the commonest, is symptomised by difficulty in walking, running or jumping, difficulty in standing up, learning to speak later than usual, being unable to climb the stairs without support and having behavioural or learning difficulties.
Bulkier frames, like Kimbowa’s, could also be seen in muscular dystrophy. All types of muscular dystrophy are progressive and incurable in nature, but Duchene muscular dystrophy is said to be the most severe, putting its sufferers in wheelchairs between the ages of eight and 14.
EARLY DEATH
Kimbowa’s muscular dystrophy has progressed to a point that he can no longer turn himself in bed or dress himself. His parents, who are shopkeepers, pay a minder to help him with bathing, dressing and perform other chores.
“They [children with Duchene muscular dystrophy] die a lot. We have lost four since I joined this school in 2006,” Proscovia Kajubi, a teacher at Kampala School of the Physically Handicapped, says. Kajubi taught Kimbowa.
Duchene muscular dystrophy results in damage of the lungs and heart and “once the heart and respiratory muscles are damaged, Duchene MD becomes life-threatening. With medical care, most people with Duchene MD die from heart or respiratory failure before or during their 30s,” nhs.uk says.
Muscular dystrophy is treated with physiotherapy and other interventions. Kajubi says they encourage sporting activities such as swimming, seat-volleyball and seat-ball, among others, so that the children still in school do not get depressed.
HOPES AND MISCONCEPTIONS
“Sometimes I get hope that it can be cured. Do you think those pastors can help?” Kimbowa asks me in a tired voice.
Knowing what I do about muscular dystrophy, I only grunt. There is a pause in the conversation, where thoughts are rearranged. Kimbowa is the first to speak.
“You know, for some people the disease is a curse,” he says thoughtfully.
Spiritually, that could make sense, but science disagrees. The disease is a result of gene mutations.
Then Kimbowa speaks about his dreams.
“If I were somewhere abroad, my life would be better. But for now, I think about settling in Kampala. That is where most of my friends are.”
Kimbowa repairs mobile phones. When I first met him in 2011, he hoped to fulfill this dream and he has. Repairing phones is easiest for him, because they are light and he can lift them. He is seeking sponsors to help him attain training in mobile phone repairs.
He can be reached on 0757112101or on 0784617959. But you have to be patient. It takes him extraordinary effort to pick his mobile phone up when it rings.
Sigh! The things we do take for granted!
The conversation turns to children. Would he want any? He brightens up for the first time in the 41-minute interview.
“I always think about that. But it is not easy to be patient with someone like me. I have tried to talk to some girls. But it is not easy,” Kimbowa says.
You can feel the smile in his voice. I tell him that it is not easy for most boys and men without his condition. Kimbowa laughs and we say our goodbyes.
