Mitigation of Gender Based Violence in Uganda

NUWODU, the National Union of Women With Disabilities of Uganda says:

Check out our documentary on the mitigation of Gender Based Violence (GBV) in the districts of Koboko, Pader and Kotido.

This Documentary highlights our experience, as NUWODU, in implementing a-three-year (2013-2016) GBV project in the Northern districts of Koboko, Pader and Kotido in Uganda proudly supported by Open Society initiative for Eastern Africa (OSIEA).

Deafblindness Uganda

Deafblindness is a condition with no useful eyesight and no useful hearing. Like deafness and blindness the effects on hearing and sight may be moderate to profound.

There are many persons with disabilities (PWDs) in Uganda that are affected by deafblindness from the effects of  congenital rubella syndrome (CRS). Rubella Epidemiology in Africa in the Prevaccine Era, 2002–2009 says that CRS is a significant cause of deafblindness in the developing world. No one is sure of the exact numbers, but it is estimated that 110,000 deafblind people are born in the developing world each year. 

Rubella or German measles is a common infection of childhood, it is also the most common cause of deafblindness. In an adult rubella may be mild with very few symptoms. In very young children rubella can be serious and may cause death. However for a pregnant woman in the first few months of her pregnancy rubella can be devastating for to the fetus. The effects of rubella, called CRS are listed in Wikipedia, the major symptoms form the classic triad of CRS:

• Sensorineural deafness (58% of patients)
• Eye abnormalities—especially retinopathy (disease of the retina that causes impairment of loss of vision), cataract (the classic clouding of the eyes), and microphthalmia (literally small eye, congenital malformation of the eye) (43% of patients)
• Congenital heart disease—especially pulmonary artery stenosis (a problem that affects blood supply) and patent ductus arteriosus (a serious conginital hear defect) (50% of patients)

No one know exactly how rubella causes fetal defects. 

In 2014 82% of children from 12-23 months were immunized against rubella reducing the number of child deaths (Immunization, measles (% of children ages 12-23 months).  An infected mother has a 10% chance of passing rubella to her unborn infant (Uganda to introduce rubella vaccine). By 2017 Uganda plans plans to have a routine measles vaccine available for everyone.

Alice Nabbanja signing: ‘What motivates me most is seeing the slightest progress in a deafblind child.’

Deafblind children may feel isolated and alone with parents unable to communicate with them. This is the story of Wasswa told by Sense International:

Wasswa is eight years old. He has profound deafness and reduced vision as a result of Congenital Rubella Syndrome. He lives with his mother Namaganda, father, Lutalo, and his twin brother, Kato, in a rental house in Salaama, Kabuuma Zone, Wakiso district in Uganda.
When Wasswa was born, he was underweight and unwell. The hospital kept him under medical observation for three weeks. Wasswa’s parents learned he was visually impaired when he was three years old. By the age of five, they began to suspect that he was deaf.
At the age of eight, Wasswa couldn’t bathe himself, and his behaviour was sometimes challenging and aggressive. Wasswa began to develop coping mechanisms, for example, he became obsessed with a straw. He had particular places where he’d keep the straw, and would get very aggressive if anyone removed it. As Wasswa held the straw with his left hand, he’d suck his right thumb, preventing him from using his hands for things like bathing or chores. Wasswa would play alone with his straw in a corner and wouldn’t allow children to get close to him. Instead, Wasswa would push the children away, often hurting them.
In May 2015, Wasswa was referred to Sense International Uganda for specialised rehabilitation and support.
As his mother explained: “On assessment day, I was able to interact with parents whose children had the same condition as Wasswa. I felt relieved when the doctor explained the type of measles which led to his deafblindness”.
Wasswa started receiving support from his Special Education Needs (SEN) teacher with very clear goals, particularly around improvement in communication and social skills, independence in activities of daily living, as well as development of his visual perceptual skills through exercising, playing and making use of touch. For Wasswa, his hands are his eyes, ears and voice.
Through attending the Community-Based Education (CBE) programme since June 2015, Wasswa is now able to communicate meaningfully. For example, when Wasswa wants a drink, he is able to bring an empty cup to his mother and take her to the fridge.
When children from the neighbourhood take Wasswa’s toys, he no longer pushes them, instead he goes straight to his mother and leads her to the children and toys.
“He is not aggressive anymore”, shared his SEN teacher.
Wasswa is now able to identify beads of colours, sort and group them, and choose his favourite red colour. He is able to take turns while playing and sharing interactive games with his brother.
Although Wasswa still finds challenges in buttoning and unbuttoning shirts, he is able to put on a pair of shorts without any assistance. Importantly, Wasswa is now able to shower by himself.
His mother said: “As soon as I closed the bathroom door, I heard him making loud noises, jumping and clapping his hands. The sound of splashing water was heard from a distance. I peeped to see what he was doing. Surprisingly, Wasswa was so happy, jumping up and down as he poured water on his head.”
In February 2016, Wasswa enrolled at Bwanda Regional Deafblind Resource Centre, which is a hub of expertise on deafblindness in the country.

For more information see Sense International Uganda's website.

There are other organisations working with the deafblind in Uganda:

NADBU (the National Association of the Deafblind in Uganda) is an indigenous, non-governmental organization that promotes the welfare of Deafblind persons in Uganda by accessing them to services in the sectors of rehabilitation, education, health, economic support, advocacy and lobbying, capacity building, training in communication & mobility and other sectors relevant for the their self-reliance.
NADBU's Overall Aim: The overall aim of NADBU is to improve the quality of life of deafblind persons in Uganda through equalization of rights and opportunities in all life spheres.The National Association of the Deafblind in Uganda (NADBU) was formed by the deafblind persons themselves.
Deafblindness is a unique category whereby a person has a combination of severe degrees of hearing and sight loss.
NADBU deals with over 500 deafblind persons in 13 districts.
NADBU has 3 staff at the moment with 5 volunteers who are deafblind.

Vaccines for rubella have significantly reduced the numbers of deafblind people being born. With the introduction of vaccines for the whole country deafblindness due to CRS should be reduced significantly.

The story of blind hairdresser Aisha Bahati

This video shows that blind people, far from being a burden, are able to lead useful productive lives. NTV says:

A Ugandan woman who lost her sight at the tender age of eight has overcome great odds to make ends meet as a hairdresser in Kampala. Aisha Bahati is an extraordinary woman who didn’t let her handicap stop her from making it in life.

Visual Impairment in Uganda

Visual impairment, is reduced ability to see. Visual impairment cannot be correct by glasses or other usual means. Blindness is used to describe complete or near complete loss of vision. Visual impairment may cause problems with activities like reading, driving, socializing and walking.

A gentleman helps lead a 

visually impaired elderly 
woman to receive 
treatment at Lira hospital

Key facts to be taken from the World Health Organization Visual Impairment Fact Sheet are that:

• 285,000,000 people are estimated to be visually impaired worldwide: 39,000,000 are blind and 246,000,000 have low vision.
• About 90% of the world's visually impaired live in low-income settings.
• 82% of people living with blindness are aged 50 and above.
• Globally, uncorrected refractive errors are the main cause of moderate and severe visual impairment; cataracts remain the leading cause of blindness in middle- and low-income countries.
• The number of people visually impaired from infectious diseases has reduced in the last 20 years according to global estimates work.
• 80% of all visual impairment can be prevented or cured.

The World Health Organization Visual Impairment Fact Sheet says that globally the major causes of visual impairment are:

Uncorrected refractive errors (that require glasses: Myopia, hyperopia or astigmatism), 43%
Unoperated cataract, 33%
Glaucoma, 2%.

An estimate of the Number of Persons With Disabilities (PWDs) in Uganda has been given in this blog. Based on 2014 population figures 376,975 people have some form of visual impairment.
There is a further risk of blindness and visual impairment in Uganda. River blindness is a parasitic skin infection. The African Programme for Onchocerciasis Control (APOC) states that in 2006 2,758,366 were at risk of river blindness or Onchocerciasis in western Uganda. A 2015 Onchocerciasis Study in Northern Uganda shows that an estimated 5% of the people in the at risk areas tested positive for the river blindness in skin tests. River blindness is a significant socioeconomic burden that can be treated with antibiotics. A 2013 article published by the World Health Organisation, Uganda interrupts transmission of river blindness in almost half of the endemic areas has the following comment:

Uganda has successfully interrupted transmission of onchocerciasis (River Blindness) in 8 out of 18 localized areas (foci) endemic for the disease and is likely to eliminate it by 2020.

This excerpt from an article from New Vision, about a married couple that are both blind makes interesting reading. Angella Apuuli and Sembataya live in Mawoto sub-county in Mukono district, a little south and to the east of Kampala. They have 3 children who are all blind:

"Sorry to make you wait," Angella Apuuli, Sembatya's wife, apologised as she put down what she was carrying. "I had gone to tend to the pigs," she said. The rat-hole of a kitchen and the mud-and-wattle pit latrine just a few metres away that lets out a foul stench, are pointers to the misery and poverty the family lives in.
Despite being visually impaired, Apuuli is a good-natured woman with a personality that puts others at ease. She is sociable with a high sense of humour and also speaks fluent English.
Seated on the veranda of their two-room house, Apuuli reminisces how she lost her sight. Her birth on December 11, 1982 in Kumi district was normal. She had her sight, but at only two years old, she lost it after suffering a life-threatening measles attack.

Measles attack

 She attended Madera School for the Blind for her primary education, studying all the subjects taught in a conventional school. The only difference was the use of a braille machine to read. She dropped out of school in S4 when her education was interrupted by the Lord's Resistance Army (LRA) rebel attack on Teso.

How they met

Apuuli's mother took her to Mbale Vocational School for the Blind in Nabumali, where she acquired skills in handcrafts, knitting and basket weaving. It was here that she met her husband.
"I was about 20 years old then. Sembatya approached me and proposed marriage. I did not take him seriously. After training, I was bound to return to Mawoto to take care of my sick mother. I gave him the directions and asked him to come and meet my mother if he meant what he said," she said. Apuuli was surprised when Sembatya, barely two weeks after she had left the institution, made the trip.

The couple's three children are visually impaired

Two things struck her; a visually impaired Sembatya coming all alone and by water via Luzira landing site.
"He pleaded with me, saying he wanted to marry me since both of us were visually impaired. He said we could take care of each other and told me that his mother had died and he was staying with a stepmother, who was mistreating him," she said.
Sembatya's emotional plea moved Apuuli to believe that he was truthful and serious. Her mother gave him a condition to take good care of Apuuli. He had just returned from the institution in Mbale and was jobless, staying with a relative in Mbiko.
"He visited me a number of times," Apuuli says.
After her mother's blessings, the duo rented a room at Mawoto trading centre in 2001. Two years later, they managed to build themselves a small house. Apuuli describes her husband as caring, supportive and loving.

Blind children

Her first born came in 2003 and brought her the happiness of being a mother. But her joy was short-lived when the child's eyesight started getting dimmer. He eventually lost his sight. They went to many places for treatment, but nothing could be done.
As if that was not bad enough, their second and third children were born visually impaired. Innocent Kabogoza, the first born, is now 11 years old and is in P3, Tito Muganga, 8, is in P2 and Timothy Jemba, 6, is in P1. They all go to Salaama Rural School for the Blind in Mukono.
The children were taken to Mengo Hospital where they were operated upon.
Muganga is now partially blind.
Apuuli says visually impaired children need the support and encouragement of their parents and it is important that they are given opportunities to explore, discover, learn and grow into responsible people.
"I am grateful to my parents for never discouraging me from doing anything based on my visual impairment. I was encouraged to do anything I wanted, including riding a bike, engaging in sports, cooking and studying braille," she says.

Apuuli's typical day

I have a wake up prayer in the morning. If I have somewhere to dig, I do so until about midday. Then I mop the house, prepare breakfast and fetch water and food for my pigs. Then I chat with my friends.
Most times, her husband is not at home to have meals with her as he leaves early by boat. Being a musician, he spends most of his time rehearsing or going around churches and functions entertaining people.
Apuuli is good at farming, but lacks land to cultivate. She has turned to piggery instead and a bit of digging. She sells the piglets and potatoes to supplement her husband's income.
"Someone may deny me a job because of my blindness, yet I can do almost everything. I can bake cakes, but I was shocked when I tried to sell mandazi at the trading centre but people refused to buy from me. I had to bring all of them back. Fortunately, my children were on holiday and they ate them. I can do any business if I get support," Apuuli says.

Sembatya was born blind

Sembatya, 32, is the fourth of eight children born to Musoke Senkungu of Mbiko in Buikwe district. He believes measles could have robbed him of his sight, though his parents still insist it was witchcraft.
He went to Spire Road Primary School (section of the blind) in Jinja up to P7. He then had to live a quiet life helping his parents rear pigs and chicken to get more income for his family. He joined Mbale Vocational School for the Blind, courtesy of Father Keveti, a Catholic priest, where he studied braille. Being intelligent and studious by nature, he quickly grasped special skills in handcraft and agriculture.
It is here that he met Apuuli, who offered him her heart and care. Sounding philosophical, Sembatya says: "Each one of us values certain things in ourselves. We look for complementary characteristics in each other."
"We always have to dig deep within ourselves to ensure that we are not making assumptions based on our condition and letting those prejudices spill over into our interactions. Obviously, blindness is a part of our lives," he adds.

Seeing his future in music

Sembatya is a humble, average man, who undertook an extraordinary feat singing gospel music. The Bible passage in John where Jesus says: "We must do the works of the one who sent me, while it is still day..." inspired Sembatya to preach the gospel through music. "My condition has not stopped me from pursuing my dreams.
I see my future in music. I write my own music, drawing inspiration from real life experiences. I sing about Jesus because there is nothing greater to sing about," he says.
You can sing about love, he stresses, but there is no greater love than the love of God. He started singing in 2005 and recently recorded a six-track album Fena Twagale Yesu.
The children were taken to Mengo Hospital where they were operated upon. Muganga is now partially blind

Community life

Sembatya is loved and respected in and outside his community. He says people are truly nice and supportive, understanding and helpful in a constructive way. He feels happy about himself and his family, their good health and their ability to move on.
He says visually impaired people move by instinct.
"Every day, we are changing what it means to be visually impaired. The sight of a blind person crossing the street independently, grocery shopping, travelling long distances and the thousands of other things we do really make a difference," he says.
Sembatya is grateful to the Lillian Foundation, a charity organisation based in Mukono that pays part of school fees for his children. Each child pays sh200,000 per term.
He also thanks the RDC of Mukono, John Kasenge, who often invites him to perform at district functions, where he gets financial assistance.

Angella and Sembatya both make a positive contribution to their community socially and economically. They have overcome stigma and prejudice to lead fulfilling lives.

For more information see Uganda National Association of the Blind's website and Facebook page.

The experience of being deaf in Uganda

Nasser Ssenyendo was the first deaf person in his village to get a degree. He talks about the importance of the support of his family and how people are changing their perception of being deaf:

Nasser Ssenyendo, talks about the barriers facing deaf people in Uganda and the importance of deaf role models to help address these issues.

Hearing Loss in Uganda

Hearing loss or hearing impairment is total or partial loss of hearing. A deaf person can hear nothing or only a small amount. Hearing loss can affect one or both ears. There are four types of hearing loss (see Wikiprdia):

Conductive hearing loss: When sounds do not reach the inner ear.
Sensorineural hearing loss: Where the cochlea (inner organ of hearing) or the nerves attached do not function correctly.
Central deafness: When the brain and/or auditory nerve do not function correctly
Mixed: Is a combination of all 3 types above.

There are many ways that it is possible to become deaf (see Wikiprdia), this list highlights some of the most important:

Aging: There is a steady decline in hearing from the age of 25 in men and 30 in women.
Genetic: Hearing loss can be inherited.
Exposure to loud noise: 5% of the population globally has some hearing loss from loud noise.
Perinatal: Premature birth or fetal alcohol syndrome may cause deafness.
Disorder: Strokes - Depending on what blood vessels affected by the stroke, viral infections like measles, mumps, rubella (also called German measles) syndrome, HIV/AIDS, meningitis, syphilis, Down's syndrome, Autoimmune disease and recurring ear infections can all cause deafness.
Medications: Some medications like quinine and gentamicin can lead to deafness.
Exposure to chemicals: Exposure to heavy metals and solvents can also lead to deafness.
Trauma: Caused by physical damage to the ear, nerves or brain can create deafness.

As has already been discussed in my blog, Number of Persons With Disabilities (PWDs) in Uganda, based on 2014 population figures there are 843,750 persons with hearing loss in Uganda.

Stigma and prejudice have become a major theme of this blog. Yet I was still shocked by the first words I encountered as I was researching the deaf in Uganda. The Good Smaritan blog says:

Kasiru: The word  reserved by the Lugandan community for the deaf. It crudely translates to stupid or unteachable in English. Many people have become so used to using this word for the deaf that they forget the people’s actual names.
What is it like to be a deaf child in Uganda? In most cases, you will be seen as mentally retarded, kasiru, and an unnecessary burden on the family, especially if you’re born into poverty. If your parents don’t simply kill or abandon you at birth, you will likely live at home in neglect and abuse. In a country with an average family size of ten, you are the last priority. You’ll receive the least resources and work the most menial jobs. Educating you will seem like a waste of money, so you won’t go to school. You don’t learn to write or read, so you will have no means to express yourself. Your attempts to communicate through shouts and gestures will be misunderstood. People will ignore, fear, ridicule, or harm you. If you’re beaten or raped, if your things are stolen, there’s no way for you to testify.

The Good Smaritan website offers scholarships for war orphaned deaf children.

The Uganda National Association of the Deaf (UNAD) website tells some of the history of the deaf in Uganda. There have been schools for deaf children in Uganda since 1959. This is part of the story:  

The idea of Education for the Deaf in Uganda was conceived in 1959 by Uganda Society for the Deaf with efforts of Mrs. Julian Lule with the blessing of administrator from Namirembe Diocese. Mrs. Julian was a teacher at Mengo primary school but her two children were Deaf hence they could not attend the normal schools.
Uganda society for the Deaf decided to establish Uganda School for the Deaf in 1959 as the first school for the Deaf in Uganda. It went on to establish other schools as the number of deaf children increased. The establishment of more schools and units was as a result of UNAD's advocacy and awareness work which emphasized the realization of potentials of Deaf people through education.

The UNAD site continues with a description of the importance of deaf sign language and its undoubted importance as part of deaf culture:

Sign Language is a visual and gestural Language based on the use of hands, eyes, face, mouth and body. A manual alphabet ( or finger spelling ) may be used along with Sign Language.
Sign Language is a separate Language which continuously develops and changes. Sign Language is a visual language expressed with eye movement as well as facial expressions.
Deaf people in Uganda, learn Sign Language as their mother tongue and English as their foreign language. It is impossible to use Sign Language with spoken language simultaneously.
Sign Language is grammatically different from spoken or written language. Sign Language represents Deaf people’s creative response to the experience of profound deafness. Deaf people in every place of the world have their own native Sign Language...
Today, it is common practice for some professionals working with Deaf people, to use Sign Language. The more the teacher’s ability to use Sign Language, the greater the academic achievements and results of Deaf children. With the help of qualified Sign Language Interpreters, Deaf students are able to undertake further training and qualification at Universities and institutions of higher learning. It is important for those unfamiliar with Deaf communities and Sign Language history to understand why Sign language is a major concern to the Deaf.

If you are in any doubt about the importance of sign language for the deaf watch this video from this blog, See how sign language can transform lives. Education and learning of sign language are the best strategies for the successful integration of the deaf and people with hearing loss.

Ugandan Sign Language

UNAD has identified many other issues that affect the deaf. It is worth having a look at these to see how much work is required for the deaf in Uganda:

Social Issues

• Social rights of the Deaf and the Deaf community e.g. right to Marriage, communication, participation etc.

• Right to access hearing Aids and special attention.

• Right to use Sign Language Interpreting services in courts,hospitals, etc

• Support for families with Deaf children e.g. counseling and career guidance.

• Support for Deaf parents with Hearing children.

• Economic support to Deaf people.

• Support for Deaf people with multiple handicaps and special needs like Deaf blind, Deaf women, Orphaned Deaf children.

• Right to access information on Reproductive health, AIDS etc

• Right to access driving permits

Working Life

• Equality in the labour and employment sector.

• General support and legal services for working Deaf people.

• Projects for unemployed Deaf people.

• Needs for Sign Language interpretation services at the work place, Educational institutions and training centres.

Sign Language

• Support to research and development of Sign Language

• Publications of books and video in Sign Language.

• Create awareness on Sign Language to the Hearing public.

• Accessing Sign Language education for the Deaf children and adults.

• Ensure the awareness, usage and preservation of Sign Language as an independent language.

Accessing Education

• Having qualified teachers and skilled in Sign Language

• Establishment of appropriate special schools for Deaf children

• Good training opportunities for young Deaf people

• The right to access Sign Language interpretation services in all forms of educational settings

• Support the establishment of special secondaryand Primary schools for Deaf and for total communication studies.

• Securing opportunities for Deaf Teachers in schools for the Deaf

Culture and Recreation

• Establish festivals and exhibition centres for Deaf persons.

• Formation and sustenance of deaf choirs /dramas of Deaf people.

• Support of games and sporting activities of the Deaf people.

• Right to integrate in socio and cultural festivals.

Information Dissemination

• Advocate and lobby for more Sign Language programmes on Television, radio and newspapers.

• Support for the Deaf film Production.

• Right to use modern technology like the web cam.

Public Relation

• To ensure a high degree of awareness of Deaf people’s needs and rights amongst decision makers, opinion leaders, families, the media and general public.

• To ensure that Deaf people have excellent access to information about the society in and out of their community

Other resources: a directory of services for the deaf can be found at Gallaudet University: The world’s only university designed to be barrier-free for deaf and hard of hearing students. Also Deaf Link Uganda is a Deaf led organisation that operates projects in urban, semi-urban and rural areas.

The number of stroke patients is rising in Uganda

Younger people are increasingly becoming affected by stroke which now affects people as young as 40 years old. Stroke also affects those with heart problems, high blood pressure, diabetes and a history of strokes in their family. NTV says:

Stroke is a medical condition in which there is less or no blood supply to a particular part of the brain causing death of brain cells. The effect of a stroke usually leads to partial or permanent paralysis depending on the part of the brain that is affected. In Uganda, there is no clear study that has been carried out to establish the incidence of the non-infectious killer disease among the population but experts from Mulago estimate a rise in the number of stroke patients.

Stroke in Uganda

Strokes occur when blood supply does not get to an area of the brain. There are 2 types of stroke. One where a blood vessel gets blocked (ischemic stroke) and areas of the brain served by the blood vessel are starved of life giving blood. The second and more dramatic type of stroke happens when a blood vessel bursts. Bursting has 2 consequences: Firstly blood does not go to the area of the brain the blood vessel supplies, and second the pressure of the blood that comes from the rupture damages brain cells.

Strokes have many complications for survivors depending on the severity and the area of the brain affected. Besides alterations in movement and sensation, there may be changes in mood and cognition. 

The high prevalence of HIV/AIDS and sickle cell disease are major contributors to the incidence of strokes in Uganda. Besides other factors like high blood pressure and diabetes. It should be noted that high cholesterol levels have been inconsistently associated with (ischemic) stroke (see Wikipedia)

Rehabilitation at the Stroke Rehabilitation Centre in Kampala

The 2010 Global Burden of Disease Profile for Uganda shows that in 1990 stroke was ranked at number 19, responsible for 0.9% of deaths in the top 25 causes of death in Uganda; by 2010 this had risen to number 14, responsible for 1.4% of all deaths. The 2014 World Health Organisation country profile for Uganda shows that strokes are responsible for 3.9% of all deaths in Uganda, ranking stroke at number 5 in the top 10 causes of death.

An Estimate of the Incidence and Prevalence of Stroke in Africa: A Systematic Review and Meta-Analysis suggests there are 317.3 stroke survivors per 100,000 people living in Africa in 2009. Which means that in 2009 there were an estimated 1,042,000 stroke survivors in Uganda.

Stroke has serious consequences if it is not recognized early, yet there is little knowledge about strokes in Uganda. The conclusion of the 2014 paper Knowledge and Perception of Stroke: A Population-Based Survey in Uganda provides the following insights about stroke knowledge:

This first report of a large Ugandan general population sample found that individuals had extremely limited knowledge of stroke and did not feel that stroke as a disorder had any personal relevance to them. Primary health care workers were not identified as a key resource in stroke care. These results indicate a need to increase public stroke awareness in Uganda. Local and regional healthcare workers are resources that are not optimally used and represent an opportunity to improve stroke prevention and stroke community response.

Limited knowledge and lack of recognition of the importance of stroke symptoms leads to further complications. In the 2015 paper Early mortality and functional outcome after acute stroke in Uganda: prospective study with 30 day follow-up the high mortality rate of patients admitted to hospital is discussed:

the high case fatality has been blamed on limited health care access, delayed presentation to hospital, and a shortage of adequately trained professionals to provide acute care and rehabilitation of stroke patients (Owolabi et al.2007) as well as lack of stroke units. Similar factors may be responsible for the poor functional outcome among the survivors seen in this study. The early recovery in activities of daily living among stroke survivors in developed countries is generally more favorable (Wade and Hewer 1987) than our findings. This study dealt with patients admitted to a national referral hospital. Hospital data on stroke are usually biased towards the more serious or complicated cases (Bamford et al. 1986). It is possible that only the most severe stroke cases end up presenting to hospital, and that this cohort is not likely to be entirely representative of all strokes in the community, given that a large number of stroke patients per year is expected in a hospital with over 1500 beds serving Kampala’s 1.6 million people, as well as an additional estimated 1.5 million from neighbouring districts and beyond. Also, only participants with onset of stroke symptoms within 7 days were recruited. While our study does not permit a causal inference regarding the relatively high mortality outcomes, it is likely that care access issues in line with limited health budgets in most of sub-Saharan Africa play a substantial role.

The problems encountered in combating strokes in Uganda are hightlighted in the 2012 paper A Descriptive Epidemiological Study on Stroke in Kampala, Uganda: A Hospital-Based Study:

In the future, the global burden of cardiovascular disease and stroke will continue to rise, as life expectancy continues to increase. In developing nations such as Uganda, barriers to cardiovascular disease recognition and treatment include low educational levels and poverty. These factors can lead to difficulty with risk factor modification, and have likely contributed to the overall increase in stroke incidence by 20% in low and middle income countries compared to high income countries from 2000.

There is hope for stroke patients in Uganda. This is the story of Ibrahim Bukenya who graduated from the Mulago School of physiotherapy. He wanted to help stroke survivors. In 2010 with the help of Grow International, Ibrahim established the Stroke Rehabilitation Centre in Wampewo. This article, Grow Movement advises Ugandan Stroke Rehabilitation Centre describes his work:

From singlehandedly running a home physiotherapy service from a rented room in Kampala, Ibrahim is now the founder and principal physiotherapist of The Stroke Rehabilitation Centre, a non-governmental organisation which treats about 15 patients, recovering from strokes or spinal problems, each month, as well as offering employment to local people.
His work is crucial in treating the severe psychological and physical conditions found in people after a stroke. Stroke survivors commonly experience depression, anxiety, loss of mobility and impaired speech. If left untreated, these conditions may last a lifetime. Before they can resume their daily lives, a long period of rehabilitation is often required. At the Stroke Rehabilitation Centre, to aid patients in their recovery process, each is individually assessed to ensure that they recieve the ideal treatment for their specific situation. The centre also offers support and advice to the family and friends of patients.

There is little doubt that the sooner a  person can begin rehabilitation and therapy after a stroke the better the outcome. The Stroke Rehabilitation Centre provides a useful service rehabilitating stroke survivors, see also their Facebook page.

Kampala: Down's Syndrome

This video shows the experience of mothers with children with Down's Syndrome in Kampala where 25,409 persons are registered with Down's Syndrome. Persons with Down's Syndrome can live up to 50 years.

The poster says:

Down’s or Down Syndrome is a learning disorder afflicting 1 in every 1 thousand children born globally including in Uganda, yet acceptance by society is relatively low since they are considered cursed.
Children with this disorder have intellectual disability and can repeat a class more than twice but this is not their only burden, most are susceptible to conditions such as heart disease, leukaemia, Alzheimer’s Disease, hearing defects and eye problems amongst others.

Down's Syndrome in Uganda

Down's syndrome (DS) or Down syndrome is a common genetic disorder caused by an extra copy of chromosome 21. DS is commonly associated with growth delays, characteristic facial features, and mild to moderate intellectual disability (see Wikipedia).

The parents of children born with DS are often normal. The extra chromosome comes by random chance during reproduction. Worldwide there is a 1 in 1,000 birthrate for DS.

The child with DS may be very healthy. However some children have serious problems. As a result it is recommended that children see a pediatrician regularly to pick up problems before they occur. Some of the problems are listed below (see NHS UK): 

Heart problems : Around 50% of children are born with a congenital heart defect.
Gut problems :  Constipation, diarrhea and indigestion are common.
Hearing problems : Most people with DS have hearing problems.
Vision problems : It is common for people with DS to have some problems seeing.
Thyroid problems : Affect one in 10 people with DS.
Increased risk of infections : The immune system does not develop properly with DS.
Dementia : People with DS tend to develop dementia from around the age of 40.

The Global Impact of Birth Defects report notes:

The birth prevalence of birth defects of genetic or partially genetic origin appears similar throughout the world...

However, some specific conditions like:

Down syndrome and neural tube defects (spina bifida) have higher birth prevalence in middle- and low-income countries. The birth prevalence of birth defects is, therefore, about 20 percent higher in middle- and low-income countries than in high-income countries.

Women over 35 years old and men over 55 years old have a higher birthrate of DS children increasing to between 2 and 3 per thousand. 

The Global Impact of Birth Defects report highlights the following example:

In rural South Africa in the early and mid-1990s, for example, the birth prevalence of Down syndrome was reported to be 2.09 per 1,000 live births and the population prevalence to be only 0.75 per 1,000 children aged two to nine years (Christianson et al., 2002; Venter et al., 1995). This difference suggests that 65 percent of the infants and children with Down syndrome had died by the age of two. Experience has shown that as effective care becomes available, population prevalence rises gradually to approximate birth prevalence (Christianson and Modell, 2004).

Rosemary Nambooze Nuwagabais the founder of the Angels's Centre for Childeren with Special Needs. Her second son was born with DS in Antwerp in Belgium. That was the inspiration for the centre funded with money from Belgium. In this article from the Daily Monitor part of her story is described:

Using a Shs14m grant from the City of Antwerp and some money from parents with children with disability in Belgium and their own savings, Nambooze and her husband started the centre in 2012. She says before starting she carried out intensive awareness campaigns in the community appealing to parents with special needs children.
“At first, I was discouraged because people in the community thought the centre would not stay for long.” But not one to give up without a fight, Nambooze started with 10 children. The aim was to create an enabling environment for such children to play.
“Most parents are compromised because house helps are impatient and cruel towards such children,” she adds.
Angel’s Centre is a platform for parents with different children to share information on how best our children can be loved and cared for, especially in areas such as concentration, toilet training and overcoming the stigma.
At Angel’s Centre, one is welcomed by a play compound with a few playthings for children.
Opposite the gate is the administration block which doubles as the reception. A medium noticeboard hangs on the wall that has pictures of some of the children.
There are eight trainers who deal with the children daily; teaching and supporting children in activities they can do without adult supervision.
Nambooze says: “I must admit that the journey has not been smooth. With all the support we provide these children, we lack financial aid yet we are dealing with vulnerable parents who cannot fully afford the costs and as such, paying the trainers and teachers is sometimes difficult.”
There is the issue of stereo-typing from the community. Some people in the community refer to special needs children as kasilu, kidomola, cabbage. This, Nambooze says demotivates both parents and the staff.
But that will not bog down Nambooze’s efforts of making a difference. “Supporting these children to become self-reliant and watching them become better motivates me to keep going on.”
She adds, that the centre’s success is measured by the children we have been able to help and the parents whose relationships have improved through the counselling we provide.”
The centre boasts of 60 children but there are others who attended to off-site.

The story of people with DS in Uganda is the all to familiar story of prejudice and stigma. This, most common of all intellectual handicaps, has a devastating effect on parents and family. Through proper education it is possible to overcome prejudice and stigma.

For more information about DS go to the Angels's Centre for Childeren with Special Needs.