Multiple Sclerosis (MS) in Uganda

Multiple sclerosis (MS) is a disease where the nerve fibers in the brain and spinal cord lose the fatty covering, they become demyelinated.  This process is like removing the insulating covers from copper wires. The damaged nerves do not function correctly and nerve impulses pass along them very slowly. There is a range of symptoms, (see Wikipedia), most commonly:

• Vision problems like double vision or blindness in one eye
• Muscle weakness or fatigue of muscles
• Trouble sensation most commonly tingling or numbness
• Trouble coordinating muscles

MS occurs in 2 types:

1. Relapsing and remitting, where the symptoms come in isolated attacks. The symptoms may permanently disappear after an attack, but often there is permanent damage.
2. Progressive, where there is a steady diminution of faculties.

The mechanism of MS is not clear.

Assessing the number of people in Uganda with MS is difficult. This 1994 paper, Multiple sclerosis in black South Africans and Zimbabweans, confidently states:

Multiple sclerosis is rare among the indigenous black people of Africa. The first account of a black patient with multiple sclerosis in South Africa was published as late as 1987. Since then a search to find black patients with multiple sclerosis in Southern Africa has continued. Seven black patients have now been traced in South Africa and five in Zimbabwe in whom a diagnosis of multiple sclerosis can be accepted. Six of the 12 patients became blind, or nearly so, from severe optic neuritis. Multiple sclerosis in these few black patients more often resembled the disorder as it occurs in oriental people than among white people in southern Africa or the black people of North America or the Caribbean

This was reported in a 1980 report Multiple sclerosis in Mulago Hospital, Uganda:

Ten patients, 4 male and 6 female Ugandan Africans, who have been diagnosed clinically as suffering from multiple sclerosis (MS) are presented. These patients were seen over a ten-year period, five of them over the last year. It is pointed out that the disease may not be as rare as the literature seems to indicate. A higher index of suspicion and more clinical vigilance might reveal more cases. The clinical pattern of MS in Uganda seems to be similar to the disease as seen elswhere.

Again this 2001 report Emerging picture of Multiple Sclerosis in Kenya is one of the few reports found discussing MS. It has the following to say in its conclusions:

MS occurs amongst Bantu Africans and may not be as rare as previously suggested and its prevalence is certainly on the increase. The development of higher incidence rates where the illness has been previously unknown may present opportunities for the satisfy of etiological factors as it emerges. There is a need therefore for proper epidemiological studies to evaluate  these factors, especially environmental factors, as the new disease continues to appear.

Further, I was interested to find this statement from the Martin MS Alliance Foundation about racial discrimination in the USA:

M.S. IN COMMUNITIES OF COLOR: “Who are the People with Multiple Sclerosis?”: “We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little "funny" at the grocery store. - We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, (M.S.) does not discriminate by social standing or class or financial or educational background or language or religion. -We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are every person. We are the People with Multiple Sclerosis. We are People, Just Like You....” - Virginia Sanchez
o Why This is Important:
AMA Apologizes to Black Doctors for Past RacismJuly 11th, 2008 • By LINDSEY TANNER AP Medical Writer
Transplant surgeon Clive Calendar has hurtful memories of being the only black doctor at medical meetings in the 1970s, met with stark silence when he pleaded for better access to transplant organs for blacks. So when the American Medical Association formally apologized Thursday for more than a century of policies [...]

• What do we know about M.S. in Africans, Asians, Hispanics, African-Americans - very little
• How many people of color have M.S.?
• How many people of color are diagnosed with M.S. each year? 
• How many studies have been done on M.S. in communities of color? 
• How many African-Americans, Hispanics, Native Americans, People of Asian, Pacifica Islander, decent etc… have M.S. and does their genetic heritage create a difference in the way the disease manifests itself, in the ways the medication works.

These are just some of the questions the Martin M.S. Alliance Foundation is working to answer as a main stay of our mission.

This article from The National MS Society, African American Resources makes the following comments:

African Americans and multiple sclerosis: The myth that African Americans do not get MS is just that — a myth. African Americans do get MS. In fact, studies suggest that MS can be especially active. African Americans:

• are more likely to experience more relapses
• are more likely to experience greater disability
• have a greater risk of progressing to require ambulatory assistance earlier
• are more likely to develop involvement of the optic nerves and spinal cord (optic — spinal MS) and inflammation of the spinal cord (transverse myelitis).

The report COMPARISONS OF LATINOS, AFRICAN AMERICANS, AND CAUCASIANS WITH MULTIPLE SCLEROSIS shows that the disease varies differently across different racial groups,  the average time from first symptoms to diagnosis is around 6 years.

World Health Rankings on the other hand ranks Uganda 65th in the world for MS with a death rate of 0.28 deaths per 100,000 people. This gives no hint of the numbers of persons with the diagnosis of MS in Uganda.

This article from the Daily Nation in Kenya talks about the problems of Living with MS:

Martin Muiruri recalls with pride the day he climbed 20 flights of stairs to see his girlfriend, Robai, at her workplace. That remains the ultimate labour of his love for Robai, now his wife and the mother of their five-year-old daughter.
So what? Men have done much more spectacular things for love, you might say, but for Martin, who suffers from progressive multiple sclerosis, the chances hurting himself on his way to see the love of his life were extremely high.
Multiple sclerosis, or simply MS, is a rare autoimmune disease that causes the body’s own defences to destroy neurons in the brain and spinal cord.
MS is debilitating because it affects the nerves. When you suffer from MS, the body destroys myelin, the fatty insulating material that covers the nerve fibres that form part of the nervous system, which controls all bodily functions.
Demyelinated nerves cannot transmit impulses to the brain or spinal cord and from either to the muscles in the body. Consequently MS patients sometimes have difficulty with simple things like swallowing food, blinking, controlling their bladder or limbs, or focusing their eyes on an object.
The disease begins with what is known in neurology as the relapsing-remitting phase, during which patients oscillate between periods of stability and getting worse. As the disease progresses, they gradually lose control of all their muscles and have to depend on others.
When the disease reaches the progressive stage, as in Muiruri’s case, there is no cure.
SAME BOAT: So it is surprising that, although Muiruri and Robai know that the future is bleak, they burst into hearty laughter along with their friends as they make fun of the embarrassing situations that MS has put them through.
“One day the driver of a public service vehicle refused to stop for him to urinate” Robai recalls.
“The man didn’t understand that I had guests from abroad in the vehicle and that that was not the time for me to embarrass myself in front of them and my daughter,” Martin continues.
The others in the meeting in a house in Buruburu, who are members of the Multiple Sclerosis Association of Kenya (MSAK), laugh because they are in the same boat.
For instance, Dennis “the menace” Gitonga is in the relapsing-remitting phase, which makes his limbs weak, causes him fatigue and and leads to spasticity.
His jocular reference to “spasticity” belies the experience: when undergoing spasicity, his muscles tighten or he experiences spasms during which he cannot control the movement of his legs.
It is such issues that stopped him from playing rugby and drastically affected his working life.
Martin first realised that something was wrong when he had trouble lifting his leg as he tried to climb a stair.
When he sought medical attention in 2010, the doctor ordered a magnetic resonance imaging (MRI) test, which revealed patches on his brain that suggested demyelination, a common symptom of MS.
Ironically, notes Martin, he had always been a hardworking person who ate right, exercised, and followed all the rules of healthy living.
The MSAK provides a useful forum where they exchange notes on their experiences, but today a few of them are meeting to share experiences.
Their discussions are punctuated with appreciation of the little things that they once took for granted.
Kamau Kimani, the association’s chairman, has lived with MS since 2006.
“Nowadays I have to think hard while planning my daily movements because I have to know where the lifts and the toilets are situated in the building I am going to,” he says.
Kimani would love to play football with his two teenage daughters and carry them when they run into his arms like he used to but he can’t.
“We used to go swimming but I stopped because I feared that we might drown … sometimes I know that they want to play, but what do I do?” he wonders.
Like Dennis and Martin, Kamau also uses a walking stick.
When he falls down, he says, he stays down for a while as he figures out how to get up because it can be quite a process.
Lucia Ndolo, who has lived with the condition since 1975, also had trouble getting up after a fall, until her physiotherapist came up with a sequence that works for her.
MULTIPLE CHALLENGES: “He taught me to roll onto my side, lie on my tummy, then get on my knees before getting onto my feet,” she explains.
Lucia, a master’s degree holder working in the Ministry of Agriculture, has to use a wheelchair, which she finds greatly distressing. She has always been a fiercely independent woman, so depending on others has been most humbling.
“There are days that I am so low that I have to rely on someone’s kindness for everything, from being dressed to… it breaks my heart,” she trails off.
Martin avoids taking fluids when he is travelling because when he gets the urge to relieve himself, he cannot not hold it back for more than a minute.
“It is difficult to relieve yourself wherever you feel the urge since every human being wants to maintain their dignity,” he says.
As if the helplessness that robs MS patients of their dignity is not enough, they have to deal with public ignorance. For instance, thanks to the way Lucia walks, people sometimes think she’s drunk.
“One day a man on the street asked me whether he could get me another bottle of beer,” she says.
Just like the name of the disease, there are multiple challenges that come with managing and living with MS. Besides, it is a frustrating disease for doctors too because it progresses unpredictably in different patients, making it difficult to assess the effectiveness of a particular line treatment.
Although official figures for the number of sufferers are not available locally, neurologist Dr Juzar Hooker estimates them to be in the hundreds of thousands, adding that his heart goes out to them.
“There are cases misdiagnosis, in which patients are treated for other diseases such that, by the time MS is diagnosed, it is at an advanced stage,” he says. In addition, some patients are considered bewitched or taken to herbalists. Then there patients who know they have MS but cannot afford treatment.
Dr Hooker says the cost of basic drugs for managing the condition is prohibitive.
For instance, a monthly dose of interferons — drugs that modulate the response of the immune system to viruses, bacteria, cancer and any other foreign substances that invade the body — costs up to Sh100,000.
Meanwhile, drugs that prevent flare-ups cost anything from Sh 245,000 to Sh350,000 a month. Sometimes he has to import drugs, whose costs are borne by the patient.
And for patients who slur, there is the additional cost of speech therapy drugs and regular MRIs, which cost between Sh45,000 and Sh70,000.
There are also treatments for memory loss since patients in the advanced stage of MS experience brain atrophy, which means their brains shrink.
HEALER OF MANY DISEASES: A study published in The Lancet last year suggested that statins — drugs that reduce cholesterol in the body — reduce annual brain atrophy by 0.3 per cent from the normal 0.6 per cent loss in MS patients.
In a month, a patient can spend between Sh 400,000 and S 1 million, yet many insurance companies do not have cover for the disease.
Other expenses include travelling by taxi so that they can ask the driver to stop if they need to, say, go to the toilet.
MS patients are also acutely aware of the quackery that comes in the form of herbalists, magic beverages and prayer.
Lucia tells of a friend who introduced her to a man who had healed “many diseases”.
“When the man said he injects any part of the body and the patient gets well, I said no thank you,” she says.
Then there are other treatments such as bee-sting therapy and aloe infusions, whose efficacy has been questioned.
In 2009, an Italian scientist, Paolo Zamboni, hypothesized that the real cause of MS was something called chronic cerebrospinal venous insufficiency, or CCSVI. MS patients received CCSVI as exciting news of a medical breakthrough.
Zamboni’s study purported to find CCSVI in 100 per cent of MS patients, and he suggested a surgical procedure called angioplasty to treat it: it entailed opening the veins that carry blood away from the head with the aim of restoring normal blood flow.
He posited that compromised blood flow in the veins draining the central nervous system leads to iron deposits around the pulmonary veins, which triggers autoimmunity and the degeneration of myelin.
Dr Hooker understands that the desire to live would drive patients to seek treatment from anywhere, even against his advice.
Even though some of his patients do not like what he tells them, he consistently reminds them that no one knows what causes MS, how it will progress in each patient, and that there is no cure at the moment, so it can only be managed.
He also understands that patients without a scientific background often view any news of a breakthrough as important, when in some cases, there is nothing new.
“I advise them to stick to well-known treatment, even when there is a scientific basis it may be a very weak one”, he says.
Dr Hooker wishes the government would give as much attention to autoimmune illnesses as it has HIV and maternal health.
“Perhaps just bear a little part of the cost of drugs for patients, or fund more research,” he says.

In summary, the suggestion that MS is rare amongst Africans has lead to ignorance about MS in Africa and Uganda. Contradictory studies of the numbers of people have fueled the debate. Despite this ignorance there are figures emerging that hint at the numbers of people in Uganda that may have MS. Combine to this the fact that it takes a long time to diagnose MS, on average 6 years in the USA, and it is difficult to assess the true impact of MS on people in Uganda. Finally, the relapsing and remitting nature of MS makes it ripe for miracle cures. Add to this the stigma and prejudice of MS and an already vulnerable group is multiply disadvantaged. 

For more information on MS see the MS Kenya website or Multiple Sclerosis Association of Kenya - MS Kenya on facebook,, or Multiple Sclerosis South Africa on Facebook.

Changing the lives of children in Uganda

A 45 minute operation which cost about $300 (in 2010) can change the lives of children forever. The poster says:

Oasis supports Smile Train and went to Uganda to see their work first hand.

Cleft lip and cleft palate in Uganda

Cleft lip and cleft palate is a group of 3 congenital conditions that may affect a newborn baby. They are also known as orofacial cleft. The 3 disorders are (see Wikipedia):

1. Cleft lip 
2. Cleft palate 
3. And both cleft lip and cleft palate together.

The cleft lip may be on one side or both sides or in the center. It may extend into the nose when cleft palate has an opening in the roof of the mouth. These disorders can result in (see Wikipedia):

Feeding problems
Speech problems
Hearing problems
Frequent ear infections

These conditions are the result of tissues not joining together properly. The cause is unknown. However the corrective surgery has a very high success rate.

This 2011 study Incidence of cleft lip and palate in Uganda estimates the incidence of cleft lip and/or cleft palate at 0.73 per 1,000 babies born. 

The 2014 study Prevalence, pattern and perceptions of cleft lip and cleft palate among children born in two hospitals in Kisoro District, Uganda has similar findings, finding that 0.77 per 1,000 babies are born with cleft lip and/or cleft palate. The study adds that mothers and families need psychosocial support after corrective surgery to ensure a successful outcome:

This recommendation corroborates previous authors who reported that surgical care alone is insufficient if harmful beliefs continue to victimize the affected individual. Mednick et al. pointed out that care of the entire person includes providing scientific explanations and understanding of cultural beliefs that may continue to traumatize individuals with cleft lip and/or cleft palate even after surgical repair.

It is clear that cleft lip and/or cleft palate are the cause of stigma and prejudice. For the study 20 mothers were interviewed with the following results:

What do you think was the possible cause of the clefts?	Supernatural (evil/ancestral spirits)	11 (55.0%)
	Eaten by worm	1 (5.0%)
	Problems during pregnancy	2 (10.0%)
	Witchcraft	1 (5.0%)
	I do not know	5 (25.0%)
How do people regard a child with oral cleft?	Scared	4 (20.0%)
	Curiosity	2 (10.0%)
	Outcast	8 (40.0%)
	Normal	5 (25.0%)
	I do not know	1 (5.0%)

24 staff were also asked about cleft lip and/or cleft palate with the following results:

What is the perceived cause of oral clefts?	Drugs	4 (16.7%)
	Witchcraft	2 (8.3%)
	Bad omen	2 (8.3%)
	Inherited	5 (20.8%)
	Environmental	1 (4.2%)
	I do not know	9 (37.5%)
	No response	1 (4.2%)
What is your assessment of community social acceptability of the cleft lip/palate?	Accepted with reservation	1 (4.2%)
	Unlikely	1 (4.2%)
	No	22 (91.7%)

A toddler and its mother are over the moon with joy after a corrective surgery on a cleft lip at a private not for profit health facility; the Comprehensive Rehabilitation Services in Uganda.

What is the experience of having a baby with a cleft lip and palate. This article, Free surgery on child’s cleft lip thrills mother, tells the story of mother and her baby:

Baby born with defect: Instead of a smile lighting up the face of the 28 year old Namatovu Sophie upon her third birth last year, tears rolled down her desolate face. The little one she had brought into the world had a physical condition; a cleft lip.
“I cried as though the child I had given birth to was dead,” she said. “I was so terrified because I had never seen this condition before in my life, but the doctors at Mulago told me to remain strong.”
Then a few weeks back, Namatovu, a resident of Makindye division in Kampala, saw an advert about CoRSU on Bukedde TV. The hospital provides free life changing surgeries for children in Uganda.
Namatovu then gathered her confidence and headed to the hospital based on Entebbe road, sandwiched between Kawuku and Kisubi.
On Tuesday, the 6 month old Lizik Namwanga had corrective surgery—at no cost, and now, she can grin ear-to-ear, beautifully, like her two elder siblings.
Namwanga urges parents not to shun children with physical defects, as most of these can be corrected early on.
“Know condition before”: Malcolm Simpson, the CEO of CoRSU said part of the problem in Uganda is that parents do not respond swiftly to such cases. He says 80% of physical disability in the country can be prevented or cured.
“The problem here is that the disabilities are neglected for a long time. When a child become five or six years, then it becomes complicated.” Dr. Francis Nyiiro, the head of the orthopedic department at the hospital said it is prudent for mothers to know the conditions of their unborn babies.
“The beauty of knowing before is that you prepare the family for what to expect. It is traumatizing for things to take you by surprise.”
“You also get counseling so that by the time you get your baby, you are ready to start treatment.”
Financial hardships: CoRSU’s operations are largely funded by donors, but they are steadily pulling out their support.
In fact, the hospital expects to carry out 5000 surgeries this year, but currently, only funding for 3500 surgeries is available. “Donors are encouraging CoRSU to be self sustaining, so we are trying to balance between charging fees and providing free surgery for children,”
The hospital has a private wing. The fees charged at this wing are used to subsidize children’s surgeries. He is also looking a fund raising drive in Uganda that can contribute towards the construction of another ward.
“Uganda has over 30 million people. We need a few of these to contribute sh2000 so that we continue offering a good service,” says Simpson.
Would the hospital consider a Public-Private partnership with the government? “I do not think government has a lot of money, because it’s got its own public facilities to support. So what we might do is get a way of government hospitals referring children here for surgeries, and perhaps, government can help with free medicine,” the CEO said.

In summary, cleft lip and cleft palate are conditions with a high amount of prejudice and stigma. Successful surgery relies on a timely intervention, and on education of parents and nursing staff. When parents and nursing staff are educated the surgery has a very high success rate. It is important to understand that surgery affects more than just the person receiving receiving it. A successful surgery removes stigma and prejudice and prevents disability.

For more information on cleft lip and/or cleft palate see Smile train stories and Cleft, Overseas Projects, Uganda.

The story of a boy with epilepsy

This video opens highlighting one of the many problems faced by Ugandans accessing medical tests. The EEG this boy required could not be accessed because the operator was away. His parents ended up going to Kenya to get the tests. The poster makes the following comments about the video:

5 year old Pierre Kisitu is a son to Peter Kisitu. In 2014 Pierre had several onsets of convulsions before he was diagnosed with fever.
But even after medication, the situation didn’t change, only later to be diagnosed with epilepsy. His father Peter Kisitu narrates
Pierre was later enrolled into African Academy School a few kilometers from wankulukuku to be able to cope with age mates. NBS TV paid him a courtesy visit at school
The shy murmuring Piere Kisitu could not hide his urge to continue learning.
Unique from his classmates, he recites a simple poem he composed with the help of his teachers. His dreams are visible his pain so clear
Epilepsy commonly known as convulsions is a disorder that has over time been socially misunderstood and leaves many very fearful.
Though Pierre’s family has struggled to find a permanent cure for their son, the efforts are just yet to yield.
Dr Edison Mworozi senior pediatrician consultant Mulago Hospital explains the dynamics of the disease.
He cites the risks that come with epilepsy in children and appeals to parents on how to deal with this common convulsion.
Though statistics are scanty, a recent report by the Uganda epilepsy’s association highlighted that 60% of Ugandans get mental illness are as a result of suffering from Epilepsy.

Epilepsy Uganda

Epilepsy is a group of neurological conditions characterized by epileptic seizures. During a seizure groups of neurons fire randomly and excessively. The causes of epilepsy are unknown but epilepsy may develop as a result of (see Wikipedia):

Brain injury
Stroke
Brain Tumors
Brain infections
Birth defects

60% of seizures are convulsive involving involuntary movements of the body. The remaining 40% are non-convulsive and may not be noticed, for example in something like an absence. A seizure can affect one side of the brain or both sides of the brain.

The survey, Epidemiology and aetiology of epilepsy in sub-Saharan Africa, which was a survey of several reports shows in one report that there is an estimated incidence of 156 cases of epilepsy per 100,000 people each year in Uganda. This means that based on a 2014 population of 34,900,000, more than 55,491 new cases of epilepsy each year in Uganda. A second report surveyed suggests that 13% of the population of Uganda have had seizures in their life.

A 2009 report by the World Health Organization (WHO), Global disparities in the epilepsy treatment gap: a systematic review, says there is a treatment gap of more than 95% for epilepsy in Uganda. That means that more than 95% of people with active epilepsy are not receiving the correct treatment for their epilepsy.

The 2013 report Prevalence of active convulsive epilepsy in sub-Saharan Africa and associated risk factors: cross-sectional and case-control studies shows that approximately 1.8% of the Ugandan population has active epilepsy. That means that based on 2014 population of 34,900,000,  628,200 Ugandans have active epilepsy.

During a seizure groups of neurons fire randomly and excessively

What are the reasons for the treatment gap for epilepsy? The 2012 study “Epilepsy is pathognomonic of witchcraft”: parental perspectives on childhood epilepsy and their treatment choices in South West Uganda has the following interesting comments to make about the treatment gap in their abstract:

Childhood epilepsy is a common, socially stigmatising and largely treatable disease. Despite this there remains a large treatment gap between the number of children with epilepsy and the number receiving appropriate anti-epileptic drug (AED) treatment. To understand reasons for the treatment gap, treatment methods and beliefs of carers were prospectively analysed for 18 children with epilepsy attending the paediatric neurology clinic at a government hospital in Uganda.
The majority of carers (61%) believed that their child's seizures had a supernatural explanation. Of these, 40% believed that their child had been bewitched or possessed by evil spirits and 50% believed that their child's seizures were caused by “Ebihungu” (meaning “birds”). 83.3% of the children with epilepsy had used complementary therapists before attending a Western medical health facility. Of the respondents using complementary therapists, 73.3% used traditional healers alone, 6.7% used spiritual healers alone, and 20% had been treated by both. Traditional healers used herbal remedies, charms, rattles or scarification marks. The cost of visiting hospital was considerable, both in transport costs and time away from farming. Traditional healers incurred great cost in the purchasing of herbal remedies. The average duration of time before starting appropriate AEDs was less than one month for children who received no complementary therapy, and 22 months for children receiving treatment from traditional healers. The influence of the family's social network on treatment seeking behaviours was considerable. 46% patients continued to use traditional medicine or spiritual healing whilst taking AEDs, suggesting many of the caregivers perceived some continuing benefit from these alternative treatments.
The popularity of alternative practitioners in the treatment of epilepsy and their continued use when taking AEDs underlines the perceived usefulness of the treatments they offer. Programmes to decrease the treatment gap in childhood epilepsy would need to include close collaboration of Western medical practitioners with traditional healers, who could help identify and refer children with epilepsy, whilst continuing to play a supportive role in the community in a culturally sensitive way. This collaboration is important as neither Western medicine nor complementary therapists can satisfactorily manage the needs of the patient and their family alone.

Epilepsy is subject to stigma and prejudice, meaning that those suffering from epilepsy do not get the correct treatment, this article, Epilepsy causes social stigma in Uganda, states the problem clearly:

Epilepsy is twice as common in Africa south of Sahara as in the industrialized countries. But the sufferers seldom get the right medical treatment. The patients are met with prejudice about witchcraft and stigma and are often taken to the traditional healer instead of to the established health system. And those who seek help in the health system often face a lack of appropriate medicines. Wrong medical treatment can have fatal health consequences, and a new cross disciplinary research project at The University of Copenhagen now investigates the use of medicines for children in Uganda
Throughout history epilepsy has, also in the Western world, been linked to myths about its causes and treatment. The illness has been considered to be caused by anything from demonic possession, punishment from the gods or lunacy. On the African continent, epilepsy is still linked with prejudice and this leads to major problems with wrong diagnoses and medicine use. In Uganda there are officially 156 new cases of epilepsy per 100,000 citizens every year, but the number is estimated to be far higher:
"We know there are at least twice as many cases of epilepsy South of Sahara as in the industrialized world. It is difficult to say exactly why, but researchers work with the theory that parasites in the brain can contribute to the disease," explains Ebba Holme Hansen, professor at the Faculty of Pharmaceutical Sciences, at the University of Copenhagen. She is coordinating a new research project in Uganda which among other things focuses on the local population's understanding of epilepsy.
"The epilepsy sufferers are confronted with prejudice and stigma because of the violent seizures which make the patient lose control, roll the eyes back and foaming at the mouth. Neighbours and families often assume the sufferer is possessed by evil spirits and, further, the condition is wrongly considered as being contagious," says Professor Holme Hansen.
Epilepsy is mistaken for malaria: The local population hesitates to contact the established health system which offers free medical treatment to patients when the correct diagnosis is made. Instead people prefer the traditional healer who tries to force the evil spirits away with herbal potions and rituals. In the established health system epilepsy is categorized as a mental disorder similar to depression and alcoholism.
Another problem is the side effects of the epilepsy drugs. Epilepsy drugs can cause drowsiness and this in turn can cause trouble for schoolchildren, reinforcing the stigma. For this reason the local Ugandan people are liable to interpret the symptoms as malaria, which also is a serious disease but far more common and far less controversial than epilepsy. At the same time the epileptic seizures can be mistaken with the fever cramps from severe malaria.
Focus on children and medicine use: Wrong diagnoses lead to wrong medical treatment, and combined with lacking medical supplies this has fatal consequences. This is the focus of the new interdisciplinary research project Quality Medicine Use for Children in Uganda, which investigates the use of pharmaceuticals for children in Uganda:
"Currently there is very little established knowledge about children and medicines in Africa, but we have strong indications of wrong use of medicines and medical malpractices in connection with e.g. epilepsy resulting in grave health problems. One cannot treat children as small adults and simply minimize the doses. It is complicated and children are a fragile patient group", explains Prof Holme Hansen.
In Uganda tablets for treatment of epilepsy are free, but the liquid medicine which is more suitable for children is very expensive - and the family pays the bill. But even if they wish to buy the medicine, they cannot be sure to get it.
"The health clinics have a certain amount of money to purchase drugs for and epilepsy medicine is often prioritized lower than e.g. antibiotics. Hence, even if your child suffers from epilepsy and you wish to buy the right treatment it can be difficult to receive the medicine", says Professor Ebba Holme Hansen.

Bearing in mind the treatment gap and the associated stigma and prejudice it is interesting to see the experience of a child with epilepsy in Uganda. This article, Raising an epileptic child, discusses some of the problems parents encounter bringing up a child with epilepsy:

Jjuuko Batesita, 9, looks pale, is weak and unable to walk due to abnormalities brought on by illness. According to his parents Proscovia Nabayinda and Julius Sserwadda, the boy seemed normal in his early years.
On carrying him, one discovers that he has no muscle tone particularly in his arms and legs, which forces him to fall.
From his wheelchair, one can see that his skin is covered with rashes.
His mother says when she gave birth to him in 2007 at Kyannamukaaka Health Centre III, she didn’t notice any problem. She says the baby began to lose appetite for both food and drinks at one and half years of age.
The couple, who are residents from Kibutamu-Kabira in Rakai District, went in search of something to stimulate their son’s appetite.
“Doctors recommended that we buy soya and also juicy fruits which we tried for several months,” Nabayinda recalls.
By the time Jjuuko was expected to start walking, he made no efforts to move. This prompted the couple to visit Kyannamukaaka Health Centre III to find out what had gone wrong with their son.
They were, however, referred to Mulago National Referral Hospital where doctors discovered that Jjuuko was suffering from epilepsy brain disorder. It was then recommended that he undergoes surgery.
“My son was weak and also had difficulty in breathing,” Nabayinda adds.
Since the family could not afford the Shs1m which was required to carry out an operation, they continued giving Jjuuko some tablets such as carbamazepine and folic acid which, they say, give him some relief.
Three years since Jjuuko left Mulago Hospital, he has been seeking treatment at Kyannamukaaka Health Centre.
“The daily expenses in Mulago were too high and the doctors told me that if he is to be operated , it would require over Shs1m which we could not afford as a family,” Nabayinda adds as her eyes brims with tears.
Every week, the family gets treatment worth Shs72,000 at Kyannamukaaka Health Centre a long with other requirements such as a bottle of honey. Jjuuko’s mother adds that he also suffers diarrhoea and frequent colds.
According to Dr Owor Bosco, who handles Jjuuko at Kyannamukaaka Health Centre III, the latter needs intensive care and treatment.
“Jjuuko is seriously sick. He needs intensive care and treatment. We are trying our best, but medication for his congenital abnormalities are expensive,” Dr Owor says, adding that the boy also faces a challenge of muscle stiffness and rigidity which makes him unable to walk.
Dr Owor encourages Nabayinda and her husband to feed the patient with adequate greens and fruits so that hehe can enough energy.
“I also advised them to give him porridge (soya) accompanied with one spoon of margarine everyday,” he adds.
According to Fr Paul Lumala, a Clinical Science and Counselling expert, all types of diseases can be treated. “Parents should be conscious of their children who suffer from these illnesses and search for treatment when it is still early. Epilepsy damages the central nervous system,” Lumala explains .
A patient with epilepsy is advised to do enough physical exercise and also eat foods rich in iron and calcium which strengths the bones and teeth. Lumala dismisses claims that epilepsy is a result of witchcraft .
“This disease is real and it can be treated in Butabika and even Mulago Hospital. People who take it for granted and call it witchcraft are simply ignorant,” he says.
He advises parents and other caretakers of children suffering from epilepsy to always shield them from getting in touch with fire, ductile and other glassware materials which may be harmful to both the victim and others .
Epilepsy explained: Epilepsy, according to medical experts is a group of related disorders characterised by a tendency for recurrent seizures. A seizure occurs when a burst of electrical impulses in the brain escape their normal limits. These spread to neighbouring areas and create an uncontrolled storm of electrical activity. There are different types of epilepsy and seizures.
Epilepsy drugs are prescribed to control seizures, and surgery may be necessary if medications are ineffective.
When identifiable, the cause of epilepsy usually involves some form of injury to the brain. For most people, though, the cause of epilepsy is not known.
According to the Epilepsy Foundation based in the US, there are about 180,000 new cases of epilepsy each year across the world. 30 per cent of these occur in children. Children and elderly adults are the ones most often affected. In Uganda, there are 156 documented new cases of epilepsy per 100,000 citizens every year, but the number is estimated to be far higher.
How epilepsy is treated: The majority of epileptic seizures are controlled by medication, particularly anticonvulsant drugs.
The type of treatment prescribed will depend on several factors, including the frequency and severity of the seizures and the person’s age, overall health, and medical history.
An accurate diagnosis of the type of epilepsy is also critical to choosing the best treatment. Medications used to treat epilepsy include; carbamazepine, diazepam and phenytoin phenobarbital.
The choice of drug is often based on factors such as the patient’s tolerance of side effects, other illnesses he or she might have, and the medication’s delivery method.
Although the different types of epilepsy vary greatly, in general, medication can control seizures in about 70 per cent of cases.
However, these drugs have also side effects to the patient. The occurrence of side effects depends on the dose, type of medication, and length of treatment. The side effects are usually more common with higher doses, but tend to be less severe with time as the body adjusts to the medication.
Anti-epileptic drugs are usually started at lower doses and increased gradually to make this adjustment easier. One of the best rules in medicine is to ‘’go low and go slow.’’
Side effects may include; double vision, fatigue, sleepiness, stomachache, skin rashes, low blood counts, liver problems and at times hair loss.
First aid for a patient: Different types of seizures may require different responses. It is applicable that an epileptic patient should always carry medical identification, in case of an emergency. Knowledge of his or her seizure disorder can help people around to provide appropriate medication.
Also relatives should reassure the child and check to see if he or she got hurt from the fall. If the seizure is a first occurrence, a medical check-up is recommended.
Parents are also advised to move child away from hard, sharp, or hot objects. Put something soft under child’s head.
Turn child on one side to keep air route clear. Do not put anything in child’s mouth or give liquids or medicines during or immediately after the seizure.

Is epilepsy a disability? I was surprised to learn that some people in Uganda do not consider epilepsy to be a disability. In the blog Albinism in Uganda it was shown that when a person with an impairment or disability interacts with the world around them they encounter barriers. This is called the social model of disability (see Models of Disability). Epilepsy is clearly an impairment. Stigma and prejudice come from peoples attitudes and are barriers. In short epilepsy can be considered a disability because people with epilepsy face the same barriers that persons with disabilities (PWDs) face getting an education, finding a job, finding a home, and gaining respect from others because of the stigma and prevailing myths about epilepsy (see Epilepsy Ontario: The Human Rights Code.

In summary, epilepsy is a heavily stigmatized illness that has many superstitions attached to it. Given the correct treatment, most people with epilepsy will be able to manage the symptoms, some will even be able to stop taking the drugs they are taking. There is a vast gap in knowledge about treatments that means many people do not get the correct treatment. This treatment gap causes the needless suffering of many people with epilepsy. We owe it to the more than 55,000 who will be diagnosed with epilepsy each year to remove the stigma and prejudice and get the treatment right.

For more information about Epilepsy contact the Epilepsy Support Association Uganda (ESAU).

Autism Spectrum Disorders Video

The woman in this video got her son's Autism Spectrum Disorder (ASD) diagnosed in Kenya. The poster has included this useful information about ASD:

Defining
• Autism Spectrum Disorders (ASD) are a complex set of neurological disorders that severely impair social, communicative and cognitive functions.
• People with ASD suffer from cognitive impairments but some have typical or above average IQs.
• Between 30% to 50% of people with autism have seizures.
• Autism was originally believed to be a form of schizophrenia brought on by a traumatic experience or bad parenting. This is not the case.
Autism Prevalence
• In the US in 2014, the CDC and Prevention’s Autism and Developmental Disabilities Monitoring Network determined that approximately 1 in 42 for boys, and 1 in 189 for girls, is diagnosed with an autism spectrum disorder.
Causes of Autism
• It is not clear what causes
• Scientists are unsure what, if any, environmental triggers may be involved in autism.
• There were beliefs in the late 1990s and early 2000s that vaccines may cause autism. But this has not been proven.
Diagnosis
a) In infants as young as 6-18 months, babies may:
- Fixate on objects
- Fail to respond to people
b) Older babies and toddlers:
- May fail to respond to their names
- Avoid eye contact
- Have a limited understanding of others emotions
- Engage in repetitive movement like rocking or flapping the arms.
- Be fixated with keeping toys or objects in order instead of playing with them

Autism Spectrum Disorder in Uganda

Autism Spectrum Disorder (ASD) also known as Pervasive Developmental Disorder is a range of disorders of which Autism is one disorder. People with ASD have common behaviours that include (see Wikipedia):

Social deficits and communication difficulties
Stereotyped or repetitive behaviors and interests
Sensory issues
In some cases, cognitive delays

It is unclear exactly what causes ASD, though genetic risk factors and prenatal and perinatal risks factors are thought to play a role. Historically an hypothesis linking ASDs to vaccines was proposed, this theory has been found to be false. Diagnosis of ASD is evidence based and requires a skilled clinician.


A 2012 research paper, Global Prevalence of Autism and Other Pervasive Developmental Disorders, suggests there is no information on the prevalence of ADD in Uganda. A survey of 32 papers published around the world from 1966-2003, Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update, suggests prevalence of all ASDs is around 30 per 10,000 but recent studies show it may be as high as 60 per 10,000. There is evidence that a better understanding of ASD and definition changes may be responsible for the increased incidence. A 2009 survey of 43 studies from 17 countries, Epidemiology of Pervasive Developmental Disorders, suggests the ratio of male:female with ASDs is 4.2:1 and more recent studies suggest the incidence of all ASDs is between 60 and 70 per 10,000. 

Based on the 2014 estimate of the population of Uganda at 34,900,000 and a prevalence of 70 per 10,000 this would mean there are  244,300 persons affected by ASDs. Of which 197,319 are male and 46,981 are female.

This article, Student sets up autism school in Uganda, speaks about the first ever school for people with ASDs in Uganda.  The school was founded by Frederick Sembatya who studying for his Masters in Autism in Wales in the United Kingdom, the article says:

Fredrick Sembatya, who will graduate from the MA Autism course in September, devotes his time to raising awareness of autism in the East African country, where very little is known about the spectrum disorder.
He teaches parents the skills and interventions they can use with their children by organising workshops and providing them with helpful resources, as well as writing articles in the local press and regularly appearing on TV shows to talk about autism.
Fredrick is currently writing a guide for parents and guardians as well as medical professionals, in order to provide an insight into autism within literature that is widely available to the community.
He has now helped several children and young adults from the age of three to 21, in areas such as special needs education, behavioural management, social skills training and self-help skills, as well as speech, language and communication.
Many of them are now communicating well, with some attending mainstream school settings.
Fredrick said: “I feel blessed whenever I change the life of someone with autism. I hope that my guide will give direction to parents, teachers and medical professionals in Uganda on how to work with autistic children and young adults.”
The University of South Wales is one of the only institutions in the UK to offer a Masters degree in Autism. Fredrick had the opportunity to study the degree after winning a scholarship, and says it was a ‘dream come true’.
“Autism is one of the most challenging conditions in the world, with no known cause or cure,” he said.
“These challenges leave communities such as those in Uganda with very few people knowing about autism, who are left with no choice but to rely on traditional or non-evidence based approaches to define, diagnose and manage it.
Thanks to his studies at the University of South Wales, Fredrick was able to learn about some of the evidence-based interventions that can be used to help children and young people with autism.
“Because of the lack of information on autism in Uganda, some parents resort to using ‘witchcraft’ as a means of managing the condition, because they wrongly believe their children are possessed by demons.
“That is why it is vitally important that more is done to educate communities about autism and prevent parents from using the services of ‘witch doctors’ for spiritual interventions.
“I am so grateful to the University for shaping my career and my future. My studies have enabled me to change the lives of people with autism as well as their families.”
Fredrick and his students appeared on NTV television earlier this month when they took part in a sports gala, demonstrating what children with autism can achieve in the world of sport and providing more information about the disorder.
For more details on Fredrick’s work at the Teens and Tots Neuro Development centre in Uganda, visit Teens and Tots Neurodevelopment Centre.

I am not cursed, I can be helped

What is it like to be the parents of an autistic child in Uganda? Benjamin Opiro's parents tell his story in Autism: Raising a different child:

Benjamin Opiro started to sit when he was five months, crawled at eight months and took his first steps at nine months. But at one year, he couldn’t talk. Not even at four. Also, he still wore diapers because he failed to use the potty. He had never uttered a word ever since he was born. Then one day, when he was five, he said the words “Banana, banana, banana. Apple. Pineapple.”
To date, the memory of hearing those three words make Grace Nyamahunge, Benjamin’s mother beam. Together with her family, they had to wait for a long three days before Benjamin said another word. And this time, his mother on reflex recorded him as he spoke. For a while after, that seemingly meaningless sentence was Nyamahunge’s ringtone. It meant the world to her and her husband John Opiro, a civil engineer, that their son could finally talk. Speech was a reward because though he was born normally, Benjamin turned out to be different from the other children.
“He wasn’t attached to anyone, not even me,” narrates his mother in a pained voice, adding, “He never played with anyone either. He couldn’t talk or respond when I tried talking to him.” Instead, he woke up at about 6am every day, and watched TV most of the day. He particularly liked fast paced and loud music or movies. Sometimes, he went through newspapers. He wouldn’t read, he just flipped through from cover to cover again and again mechanically for about two hours.
Because he couldn’t talk, he cried whenever he needed something and whoever was taking care of him had to guess what he wanted. All this made motherhood much harder for Nyamahunge. Benjamin was also sickly. Once he had pneumonia, another time he battled with adenoids and was almost operated for obstruction.
At first, his parents simply thought he was finding trouble singling out one language to speak of the many used at home, hence the delayed speech. By two, however, Benjamin’s father was worried and secretly consulted his medical friends. One of them said it might be a development issue, something to do with the brain, and recommended a checkup at Mulago Hospital. The couple decided to browse on the Internet, and found he had symptoms of autism, said to be irreversible and that he would never talk all his life. That’s when they started really worrying.
“It kept me awake at night, wondering how he would manage in this competitive world, unable to talk. I dreaded my son having to use sign language, which most people don’t know,” Nyamahunge says.
Seeking medical help: At Mulago Hospital, he was diagnosed with attention deficiency hyperactive disorder. It meant he was hyperactive, so, his concentration was too low to learn a thing, unless it was taught repetitively. For example, for potty training, he had to be taken to a potty at the same time every day in the same kind of environment and repeated over a long period of time for him to learn that he had to ease himself. During the visit at the hospital, his mother was counselled on what to expect. The doctor said that usually if addressed below the age of five, the condition could be averted.
“We were told that though children like him would not excel in the 14 subjects at school, with a specialty though, they would be very good at it.” In denial, Nyamahunge, sought a second opinion in Nairobi at Aga Khan Hospital where it was confirmed that her child was autistic. “It was the most frightening moment in my life – learning that Benjamin had autism made me feel like my world was crumbling down upon me,” she, with difficulty, recounts.
With the friend she had chosen to stay with rather than at a hotel, they prayed as Nyamahunge asked God why, and wondered whether she was responsible somehow. The prayer helped keep the crazy imaginations at bay.
In the months that followed, Nyamahunge, the private-public partnership specialist at Strides for Family Health – Uganda, lost so much weight and interest in everything. During the day, she kept on wishing she was with her son hoping he would notice her when he saw her. At night, sleep was replaced with constant nightmares. Social life like partying was erased completely from the picture, and her husband, who seemed to suffer more calmly, was also pushed away as she became distant.
Then, there were his two sisters, who were confused about Benjamin never talking but instead fighting with them. Slowly, it was explained to them and they started appreciating and treating their brother the way they had been asked to. They are still adjusting, especially Elsie, the second born who is just a year older than Benjamin. One of the things that hurt the most was people openly wondering about his inability to talk like his age mates. Nyamahunge didn’t know how to explain to everyone his condition.
Opening up: The couple eventually had to, uncomfortably, explain his condition to neighbours when Benjamin developed a tendency of leaving home and wondering about aimlessly, so they could watch out for him. Thankfully, he eventually grew out of that habit. At three, he was enrolled at Daffodils for nursery school, where after term one, he was discontinued due to failure to catch up with classmates. When she mastered the courage to share her story with her fellowship members, another mother with an autistic child recommended Dawn Special Children Centre, in Bukoto.
On Benjamin’s first visit to the centre, he had a mixed range of behaviour, some of which are commonly noticeable with autistic children; others are noticeable with those with ADHD. He was there for a year and half and the mother says, it was a very constructive time for him. He was potty trained and his speech, social skills and concentration improved. Enough for him to be the master of ceremony at the year ender school event in his last term there. Nyamahunge proudly narrates: “He took us through the agenda bit by bit all from memory. He was amazing, many parents wondered what he was doing at the special children centre and that made me realise how far we had all come.”
He was, in fact, readmitted to Daffodils after passing the interview. “I was so happy that our son had enrolled in a ‘normal’ school,” she says. Her husband sent a beautiful message to everyone telling them about the news and thanking them for their support.
Benjamin is now a lot better but his speech is not yet perfect. Sometimes he launches into baby talk and is barely inaudible or understandable. He is very bold and outspoken. He is good with electronics, likes music and is a good dancer – he can break dance, spin and dance all kinds of dance moves. He is also a fast runner and he doesn’t easily get tired. His parents believe he is going to be successful once they have established what he is good at. His father fondly calls him the “10th wonder of the world”.

In summary, ASDs are a range of disorders that require a great deal of understanding from families and society. With education and knowledge the burden of stigma and prejudice faced by families can be relieved. Though there is a great lack of information about the numbers of people with ASDs in Uganda, people with ASDs are well represented in Uganda by organisations that educate, lobby and offer advice.

For more information on ASDs contact the Komo Center, the Teens and Tots Neurodevelopment Centre and Empowered autistic children uganda on Facebook.

Donations Page

Please take some time to check out our Donation page. You will see that a fundraising page has been setup on the Give A Little website in New Zealand. This page will raise funds for the Abilities 256 festival to celebrate the achievements and abilities of persons with disabilities in Uganda. All money raised will go directly to Disability Support Uganda (DiSU).



At time of posting $10.00 have been raised. To check the progress please look at the Donation  page.

Thank you to everyone supporting DiSU.

All children have the right to free education

All children have the right to free primary school education in Uganda. This need is not being met in schools because teachers do not have the correct training to work with children with disabilities (CWDs). In contrast special schools provide the support and care for CWDs but they are not free. The poster says:

I produced this movie throughout my time as GIZ (German International Cooperation) child protection adviser in Uganda (2004-2007) together with Great Lakes Film Productions in Kampala.

Introducing Disability Support Uganda

Who are Disability Support Uganda?

A short video that talks about the work DiSU does removing the stigma and prejudice of disability in all its forms.

Intellectual Disability Uganda

Intellectual disability (ID), also known as mental retardation is a general disorder of development of the brain, it manifests in diminished intellectual and adaptive functioning. It is defined as an intelligence quotient (IQ) of less than 70 and additionally deficits in 2 or more adaptive behaviors for daily living. ID was once focused on intellectual ability, it now focuses on ability to interact in daily life. This means that a person with a low IQ may not be considered intellectually disabled. Wikipedia continues with the following insight:

The terms used for this condition are subject to a process called the euphemism treadmill. This means that whatever term is chosen for this condition, it eventually becomes perceived as an insult. The terms mental retardation and mentally retarded were invented in the middle of the 20th century to replace the previous set of terms, which were deemed to have become offensive. By the end of the 20th century, these terms themselves have come to be widely seen as disparaging, politically incorrect, and in need of replacement. The term intellectual disability is now preferred by most advocates and researchers in most English-speaking countries. As of 2015, the term "mental retardation" is still used by the World Health Organization in the ICD-10 codes, which have a section titled "Mental Retardation" (codes F70–F79). In the next revision, the ICD-11 is expected to replace the term mental retardation with either intellectual disability or intellectual developmental disorder, which the DSM-5 already uses. Because of its specificity and lack of confusion with other conditions, the term "mental retardation" is still sometimes used in professional medical settings around the world, such as formal scientific research and health insurance paperwork.

ID affects 2–3% of the world population, 75-90% of those affected people have mild ID.

We do not need sympathy.
All we need is opportunity.

People with IDs face many problems. The shortage of accurate data about numbers is unsurprising. In the 2009 paper Perspectives of intellectual disability in Africa: epidemiology and policy services for children and adults the author seeks to establish the reasons for this lack of information. The following points are summarized:

• There is a paucity of data about ID in African countries because of the shortage of trained psychiatrists, often less than 1 per 1,000,000. 
• Negative attitude to people with ID is pervasive
• IDs cause a heavy financial burden taking up 10% of the mental health beds in hospitals in Nigeria.
• HIV/AIDS complicates matters because many children with ID are orphans
• Persons with IDs face prejudice and stigma from medical staff
• The legal system is ill equipped to cope with individuals with IDs

The conclusions of the 2013 paper, Intellectual disability in Africa: implications for research and service development, are equally stark:

Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken.

The paper  continues:

People with ID are amongst the most marginalised groups globally. They experience social exclusion on a much greater scale than their able-bodied counterparts and this experience is intensified within contexts of poverty such as those on the African continent. Furthermore, even where services are available for persons with other impairments, ID is often neglected, in part due to a dearth of advocacy by and for them.

The paper ends summarizing the challenges that face people with IDs in the future:

The twenty-first century has seen world-wide economic, political and social changes. As respect for human rights grows within continental Africa, the economic growth of nations expand and their political systems become more democratic, then the future of disabled people should become more hopeful especially as the UN Convention of Rights of Persons with Disabilities has been ratified by many African states. However, determined efforts are needed to ensure that these citizens do indeed benefit but for this to happen the foundations for sustainable development need to be laid now. The identification of priority issues and the gathering of indigenous, evidence-based information are critical foundational steps.

Inclusion is a right not a special privaledge for a selected few

ID affects the whole family. What is it like to be the sister of someone with ID? This is the story of Rhona, written by her sister (Home Health The pain of raising a mentally retarded child):

Whatever happened to you, Rhona. Where did your words go? Why won’t you just be normal, like any other child? You see, sometimes I want to slap you. But then again I can’t. In your small world, perhaps, undressing and walking about naked is totally logical.
In your mind, maybe, you never understand that you should wear sanitary towels during your menstruation period. And yes, to you, it is just reasonable that the best defence you can put up is fighting when we try to force you to wear pads.
after all, you have this of incredible energy in your arms; I would never know how you got it.
These are only a few of the questions that run through my mind looking at my 20-year-old mentally retarded sister.
I feel an overwhelming sense of despair. You never know what else to do when you wake up and she has soiled her beddings. You just never know what to make of her, when you wake and she has thrown all the day’s meals in a trash can. You can never know what to do when she refuses to eat food for two days in a row; or when she refuses to wear sanitary towels and stains everything with blood.
Growing up, I never really understood why she was not talking or walking. While the rest of us played out and about, Rhona was always there — stuck in one place.
Perhaps it was that swelling that she was born with on the “soft part” of her head. At just about three months, she underwent an operation to have the swelling removed and it was successful.
She started walking at about six years of age. Talking was often with much difficulty so much that sometimes she had to bang her fist hard on the table for some words to come out. But at least she always managed to say something.
As she grew older, she seemed keen to go with us to school. But after a week of ridicule from her Primary One peers, she could not go on. In fact, we too were ridiculed as “siblings of the musilu”. Because she was slow in everything, other children laughed at her.
If she wet her underwear in class, word would spread from the pre-primary section to the P7 class.
Needless to say it was disheartening when everyone gathered to look at my “musilu” sister. I could have told them to mind their business or maybe explained that it was a condition that could happen to anyone. But as a 10-year-old, I often burst into tears. I could never understand why my sister was the way she was. Why, if the operation was successful, was she not growing normally?
I started dreading school because I never knew what to tell anyone who asked about Rhona. At lunch time, everyone gathered to look at how she fed like a baby; as she often smeared food all over her mouth. School just sucked.
My parents were later to overprotect Rhona. Dad tried to homeschool her. She had keen interest in crocheting and my mother was somewhat confident that since Rhona could not go to school, she would perhaps make a living out of crocheting.
Afraid of the bullying from the rest of the world, my parents jealously guarded Rhona so much that after their demise, we didn’t know where to exactly start. I don’t know if she is mourning or grieving in her own way, but Rhona has since deteriorated. The few words she used to say are no more. Her mannerisms have changed from the once calm girl to rough. She cannot bathe herself. She cannot take herself to the loo and she won’t feed herself. If it rains and we are not anywhere near to take her inside the house, be sure she will get drenched.
She unconsciously shakes her head all the time, laughs to herself all the time, as saliva sometimes flows freely. At some point you are afraid, her neck could break as a result of shaking it. She keeps scratching her face so much that it has now darkened yet she is light skinned.
She laughs to herself without reason. Some mornings when you think she has woken up in high spirits, she won’t accept to wear anything. If she does, she will remove it in a couple of minutes and soak it right away; or at least soak all her dresses and stay naked with all her breasts out.
You want to bury your head in the sand if you have visitors and she shows up in the sitting room naked. Sometimes she gets up and throws out everything you have in the house; from the utensils to food.
On the day when she appears “normal” she will wake up and bathe every 15 minutes. Should you stop her, she will hit you with all her might.
We will never know if she has a fever. We have to keep a doctor on standby to keep monitoring her. But she will never say anything. The words totally disappeared. Where they went, I will never know. Whether the doctors touched an important part of her brain during that operation they carried out on her head, I will never know. The stark reality is accepting and parenting you the way you are, Rhona Owomugisha. 

In summary, due to heavy stigmatization and prejudice, not only in Uganda but on the whole of the African continent, knowledge about persons with IDs is scarce. Little is known about the numbers of people affected by ID in Uganda. There is a great lack of understanding about the needs and rights of persons with IDs. There is a need for the education of the general population and greater awareness of the issues that affect people with IDs and their families.

For more information about IDs contact Uganda Parents of Persons with Intellectual Disabilities (UPPID) and also INCLUSION UGANDA (Nee: Uganda Association for the Mentally Handicapped (UAMH/IU).