Rolling back depression in Uganda

A video about the work of Dr Ethel Nakimuli Mpungu of Makarere University who was involved in Developing a culturally sensitive group support intervention for depression among HIV infected and non-infected Ugandan adults: A qualitative study. The abstract for the paper says:

Background: Depression is ranked first among neuropsychiatric diseases that contribute to the burden of disease in low- and middle-income countries. However, access to antidepressants is limited and there is a dearth of locally developed psychotherapeutic interventions targeted to treat depression.
Aim: We aimed to obtain information on the cultural understanding of depression symptoms, complications and treatment methods used in post-conflict communities in northern Uganda in order to inform the development of an indigenous group support intervention to treat depression.
Methods: Focus group discussions (FGDs) were conducted with a total of 110 men and women aged 19-68 years. FDGs took place in a private space, lasted about 2-3h and were conducted in the local language for patients and their caregivers and in English for health workers. Interview transcripts from the FGDs were reviewed for accuracy, translated into English and transcribed. QRS Nvivo 10 qualitative data analysis software was used for coding and thematic analysis.
Results: Our study revealed community misperceptions about etiology, presentation and treatment of depression. Regardless of HIV status, most FGD participants who were not health workers linked depression symptoms to HIV infection. Although there were concerns about confidentiality of issues disclosed, many FGD participants were supportive of a group support intervention, tailored to their gender and age, that would not only focus on treating depression but also provided them with skills to improve their livelihoods. Simple CBT techniques were deemed culturally appropriate and acceptable.
Limitation: Generalizability of study findings may be limited given that the sample was primarily of Luo ethnicity yet there are different ethnic populations in the region.
Conclusion: Local communities can directly inform intervention content. The participants׳ preferences confirmed the need for a gender-specific intervention for depression that extends beyond medications and empowers them emotionally, socially and economically.

Mental Health: Depression in Uganda

Wikipedia defines Major Depressive Disorder (MDD) or Depression or as it is commonly known as:

a mental disorder characterized by a pervasive and persistent low mood that is accompanied by low self-esteem and by a loss of interest or pleasure in normally enjoyable activities. The term "depression" is used in a number of different ways. It is often used to mean this syndrome but may refer to other mood disorders or simply to a low mood. Major depressive disorder is a disabling condition that adversely affects a person's family, work or school life, sleeping and eating habits, and general health.

It is important to understand that MDD is more than just low mood. The person diagnosed with MDD cannot just snap out of it. They may require medication or long-term therapy to come to terms with the condition.

In a 2011 study Poverty, life events and the risk for depression in Uganda, 29.3% of people interviewed were found to have MDD. The variability of MDD was strongly associated with district varying from 7.7% in Bushenyi to 49.6% in Moyo. 

Major risk factors for developing MDD in both men and women were identified as:

socioeconomic related to deprivation (no formal education, having no employment, broken family) and poverty (low socioeconomic status).

Other studies have found lower but no less alarming percentages of people affected by MDD. For instance the Assessment of depression prevalence in rural Uganda using symptom and function criteria found that 21% of respondents had depression. The prevalence of depression in two districts of Uganda reported 17.4% incidence of depression. 

In a 2013 study Prevalence and risk factors of depression in childhood and adolescence as seen in 4 districts of north-eastern Uganda the prevalence of 7.6% MDD among children and adolescents was found. Socioeconomic deprivation, experience of war trauma and orphan hood were not significantly associated with depression. However demographic factors like the quality of the child-principal care-giver relationship and the presence of psychiatric co-morbidities in the child's life were the important independent determinants of childhood depression.

Based on these figures it is possible to see that more than 1 in 5 Ugandans is affected by MDD. Moreover in a population of 5,625,000 PWDs (see my blog Number of Persons With Disabilities (PWDs) in Uganda) it is likely that many more than 1,125,000 PWDs will be affected by MDD.

A Yale Global Health Review article highlights the problems Uganda must face caring for individuals with mental health problems:

specific mental health policy does not exist and mental health is not mentioned in the general health policy. Government funding for mental health does not exist. There are a grand total of 28 mental health outpatient facilities in the entire nation. Ugandans face an alarming dearth of mental health professionals and workers: one psychiatrist for more than a million people, one mental health care nurse for every 130,000 people, one psychologist for every five million people.

There is hope, a new type of treatment has been developed:

called Group Interpersonal Therapy, or GIPT. True to its task-shifting roots, this modified form of talk therapy is facilitated by non-professionals. Unlike the aforementioned studies, GIPT was inspired by the second branch of talk therapy, interpersonal therapy. While interpersonal therapy is normally conducted one-on-one, GIPT operates in a group but focuses on improving human interaction to treat depression. In Uganda, GIPT sessions were led by locals who had undergone two weeks of training. The patients receiving GIPT drastically improved in comparison to the control group. Where the control group saw around a 40 percent reduction in depressive symptoms, the intervention group saw almost an 80 percent reduction. A New Jersey-based organization called Strong Minds implemented the GIPT intervention model from this study in other regions of Uganda. After sixteen weeks of group interpersonal therapy, Strong Minds saw incredible results: 94 to 97 percent of patients were found to be depression-free. Their mental health facilitators had been trained for just ten days in GIPT.

In Uganda Strong Minds has a team of Mental Health Facilitators that work to improve the lives of community members facing depression. The team works with individuals in the community to identify then treat depression through GIPT. Strong Minds is helping individuals to learn the skills necessary to manage and reduce their depressive symptoms, so that they can return to their productive lives.

In summary the major risk factors for developing MDD are all socioeconomic. They are:

• Low socioeconomic status
• No formal education
• No employment
• Broken family
• Poverty

It is important to understand that PWDs score significantly less across the board on all socioeconomic indicators (see Poverty and Disability in Uganda). Therefore PWDs are at greater risk than the general population of developing a MDD.

The experience of a spinal cord injury in Uganda

What it is like to have a spinal cord injury in Uganda?

This lady remains positive and focuses on her rehabilitation exercises to keep her healthy. 

Spinal Cord Injury in Uganda

A spinal cord injury (SCI) is trauma to any part of the spina column that results in damage and alteration of function of the nerves of the spinal cord.

The spinal column has in its center nerves that control movement and sensation. Damage to any part of the spinal column can result in anything from partial loss of movement or sensation, to a complete loss of movement and sensation to all the nerves below the point of the injury. An injury can occur anywhere on the spinal cord.

The outcome of the injury can be anything from temporary to permanent quadriplegia (also known as tetraplegia) from a neck injury, to paraplegia for lower injuries. 

Complications of an SCI include:

Muscle atrophy
Pressure sores
Infections
Incontinence of bladder
Incontinence of the bowels
Breathing problems 

The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate estimates that in East Africa the incidence of SCI is 21 per million every year. For an estimated 2016 population of 37,782,971 that means that approximately 793 people will have a traumatic SCI in Uganda this year.

The report International Perspectives on Spinal Cord Injury estimates that around two thirds of SCIs (64%) are caused by transport accidents. A report Prevalence and presentation of spinal injury in patients with major trauma admitted in Mulago hospital concludes:

The prevalence of spinal injury in patients with major trauma admitted in Mulago Hospital is 8.8% thus a serious problem. More than 50% of the respondents had neurological injury and Frankel’s score A. (Note: a Frankel score of A indicates a complete injury with no motor or sensory function below level of injury).

The report's conclusion continues, SCI's

are found in the most economically productive age group of 20 to 40 years therefore a big socioeconomic burden to the nation. There should be measures instituted by the policy makers to prevent spinal injury and the hospital should be fully equipped to manage spinal injury patients before they go back into the community.
Road safety measures should be enforced by the Police, Ministry of works and transport, so as to prevent road traffic injuries.

Importantly:

A Spinal rehabilitation center should be set up for patients with spinal injury in Mulago hospital, both in terms of infrastructure and trained personnel.

The Spinal Injuries Association in Uganda does valuable work. This posting from their Facebook page of 14th February 2014 shows that even among fellow persons with disabilities PWDs) people with SCIs feel marginalized.

There is little doubt that SCI is a disability like any other disability with its own feelings of stgmatization and prejudice.

Henry Nyombi is the Chairperson for the National Union of Disabled Persons of Uganda (NUDIPU) and has an SCI

The Uganda Spine Surgery Mission does valuable work throughout Uganda.

There are few resources for people with SCIs in Uganda, see Spinal Cord Injury Resources in UGANDA for some useful information.

How asthma can affect your life

Asthma can be a serious debilitating problem for those that suffer its effects. This video looks at the experience of those having asthma. NTV says:

Even without national statistics on asthma in Uganda, this non communicable disease is very much present and on the rise. Globally according to the Union and WHO, over 235 million people suffer with this lung disease.
Much as it's inherited, it's threats are numerous because most are from the environment with air pollution topping the list.

Asthma in Uganda

Asthma is a long term condition that is caused by inflammation of the lungs and airways. Symptoms vary, the most common is constriction of the bronchial tracts causing airflow obstruction with the associated symptoms of wheezing, coughing, chest tightness and shortness of breath. Asthma is thought to be caused by exposure to allergens and irritants. The World Health Organization says that asthma cases are on the rise in Africa possibly due to urbanization and air pollution.

Asthma attacks are graded varying from mild to severe and persistent. Moderate persistent asthma will cause  a decrease in exercise capacity. Severe persistent asthma that has continual symptoms with frequent attacks and frequent symptoms at night will limit activity. A person's asthma does not necessarily have the same severity all the time. With good management the symptoms can be reduced. Asthma that starts in childhood may also become less severe (see Physical Effects of Asthma).

World Asthma Day 3rd May 2016: A nurse demonstrates the use of an inhaler at an event in  Entebbe.

The Prevalence of asthma and characteristics of primary school children with asthma in Kampala district study found that prevalence of asthma was 13.8% amongst children 8 - 14 years of age. The study reported that common triggers for asthma attacks were:

use of charcoal as cooking fuel, attendance of school in the Peri-urban divisions, family history of asthma and keeping an animal in the house overnight.

A further study, Factors associated with asthma among under-fives in Mulago hospital, Kampala Uganda: a cross sectional study, reports the following common causes for asthma:

The study results show that atopy (the predisposition to other allergies), prematurity and socioeconomic status, are important factors in development and/or exacerbation of asthma symptoms in young children.

The report notes that asthma is associated with a high level of education of the caretaker. The report continues:

Level of education was used as a crude indicator of socioeconomic status. Researchers in developed countries have shown that asthma is associated with low socioeconomic status. However, in low income countries, the prevalence of asthma is higher among the affluent. This is thought to be due to adapting the Western life styles where children are exposed to allergens, infections, motor vehicle pollution and irritants, from early infancy.

It is estimated that 4.4% of adults in East Africa are affected by Asthma (see Estimated Burden of Fungal Disease in Uganda.

In the blog John and Dayna in Uganda – Challenges in the diagnosis and treatment of Asthma the writer describes some of the problems health practitioner face when diagnosing asthma:

• Clinicians being afraid to give a patient (or the parent) a diagnosis of asthma. They feel that it is easier to call it “unstable airways disease” or “chronic bronchitis” or “airway hyperactive disease” due to the stigma associated with a firm diagnosis of asthma.
• Many drugs are too expensive for patients and therefore they tend to use cheaper ones or none at all.

Preventative medications are expensive in Uganda. This article on Asthma Patients in Uganda Resort to Herbs Over High Cost of Treatment  describes a common situation:

Rebecca Kabuya is among the patients who use traditional herbs for treatment whenever she gets attack.
Here’s a story she shared with the Continent Observer’s Joseph Elunya.
I’ am a 22 year-old girl and a student in my final year at University, in Uganda. I have been battling with asthma since my childhood and I have used various medications whenever I am attacked. Having asthma, is a very big problem, because whenever its cold like today, my chest gets congested and sometimes I end up fainting.
Whenever I get the attack, my father has to rush me for treatment, and usually they have to inject me two times so that my condition can normalize.
I usually get the attacks if I am in a new environment that I am not used to or when it’s too cold. I formerly used Amophlene and Salbutamol, for treatment, but these days I no longer use them because they are too costly and also have side effects.
For now I have resorted to use donkey and camel’s milk as a remedy whenever I’ am attacked by asthma. I also use traditional herbs especially the ones which are being sold by Indians in Kampala.
These traditional herbs are good because they are cheap and they don’t have side effects which is synonymous with the drugs they used to inject me with.
Dr. Martin Okot a lung health expert and President of Uganda Thoracic Society says the treatment for asthma costs about US$15. He however declined to state whether the treatment is affordable.

In an interview with Dr Harriet Mpairwe and Mutebi Muhammad entitled Uganda: Lifestyle to Blame for Rise in Asthma Cases the following points are noted:

The current international treatment guidelines recommend inhaled medication (inhalers) for asthma patients but they are not readily available in Uganda.
"Most children are being treated with oral tablets since they are cheaper but they come with many side effects like palpitation (shaking of the body) and the heart pounding heavily and at fast rates," she says.
...
There are no home remedies that treat asthma except for the controllers and relievers after assessment by a clinician. When a person develops an attack, they are given salbutamol inhaler relievers which immediately clear the blockage in the airway. There are daily basis inhalers called controllers. These may include Beclomethasone and Prednisolone that help in the management of the symptoms but do not treat asthma.
"There are herbalists who claim to have herbal medicines that treat asthma but I cannot recommend people to use them because we are not sure what is contained in the medicines," says Mutebi.

In summary, asthma is a condition that has stigma attached to the diagnosis. Additionally the recommended preventative treatments for asthma are expensive costing around US$15 per month. Cheaper medications that target the whole body have bad side effects. As a result people are resorting to the unproven treatments of herbalists. It is fortunate that the risk of dying from an asthma attack is very low (see the Global Asthma Report).

In The Dangers of Untreated Astma Dr. Mayank Shukla describes the following dangers:

Over time, untreated asthma can also lead to lung scarring and loss of the surface layer of the lungs. The tubes of the lungs become thicker and less air is able to pass through. The airway muscles become enlarged and less able to relax. This lung damage may be permanent and irreversible. Treating asthma with a daily controller medication will prevent long term lung dysfunction and reduce the dangers of untreated asthma.
In severe cases, untreated asthma can lead to death, when the airways close and the rescue medications don’t work fast enough to open them up. In New York City alone, about 150 people each year die of asthma (NYC Department of Health and Mental Hygiene). Is your asthma under control?

 For more information see the Global Initiative for Asthma (GINA). You can get your own 2016 Pocket Guide for Asthma Management and Prevention here.

Report on 2016 study of Sickle Cell Anemia

The last study of sickle cell anemia was more than 50 years ago. The study in the video below is an important update on the changing numbers of those with sickle cell anemia in Uganda. NTV Uganda describes the video as:

A new study shows that seven out of every 150 children in Uganda have sickle-cell disease, and that in every 100 children, 13 have the sickle-cell trait. These are some of the findings presented at the Uganda Sickle Surveillance study, disseminated today by the department of Pediatric and child health Makerere University college of Health Science working with Ministry of health.

Sickle Cell Disease in Uganda

Sickle cell disease (SCD) is a common problem in tropical parts of the world that have malaria. It is a genetic trait that confers advantage to those that have one gene affected making malaria attacks are less severe. When both partners have a single gene affected, they may give birth to a child with SCD. Migration of people affected by SCD has meant that the disease has become more common in Europe and America. Wikipedia continues stating that SCD

is a group of genetically passed down blood disorders. The most common type is known as sickle-cell anaemia (SCA). It results in an abnormality in the oxygen-carrying protein haemoglobin found in red blood cells.

SCD symptoms include episodes that are painful which might cause a sufferer to become bedridden, hospitalized, anemic, short of breath, and vision impaired. They can include jaundice, stunted/delayed growth, chest pains and headaches. Also lack of oxygen from the abnormal red blood cells can cause damage to other body organs and functions. Severity of symptoms varies greatly as does the amount of disability (see Can I Work With Sickle Cell Disease?)

SCD can lead to various chronic and acute complications, several of these have a high mortality. 

A 1984 report Sickle cell disease in Uganda: A time for action found that in a population of 25,000,000 it could be expected that 25,000 babies would be born with the condition each year. This would mean that in a population of 5,625,000 disabled (see Number of Persons With Disabilities (PWDs) in Uganda), estimated from 2014 census, it could be expected that substantially more than 5,625 babies would be born each year with SCD to PWDs.

Prevalence of sickle cell trait in 112 districts in Uganda Prevalence ranged from 2·5% to 23·9%

In May 2016 the 6th International Symposium on SCD in Central Africa (also known as REDAC from the French name Réseau d’Etudes de la Drépanocytose en Afrique Centrale) was held. A report Burden of sickle cell trait and disease in the Uganda Sickle Surveillance Study (US3): a cross-sectional study in Uganda found:

Prevalence was highest in the Mid Northern and East Central regions. Overall, the prevalence of sickle cell trait was 13⋅3%, but it was more than 20% in eight districts. Among babies aged 6 months or younger, the overall prevalence of sickle cell trait was 13·2% and of disease was 0·8%, which suggests that at least 15 000 babies per year are born with sickle cell disease in Uganda.

The report also noted that 

Age and HIV (human immunodeficiency virus) status also seemed to be associated with early mortality in children with sickle cell disease, as we took reduced prevalence of sickle cell disease in children older than 12 months and those who were HIV positive to indicate early mortality.

Further research in this area is clearly needed.

The Sickle Cell Association of Uganda says "Sickle cell does not belong in the closet!":

One of the greatest Ugandans who ever lived was Philly Bongoley Lutaya who in his own words gave Aids “a face". Taking on his philosophy is Ruth Nankanja a sickle cell patient.
Ruth soon realized that people would rather sweep sickle cell under the carpet and forget about it... she knew only too well the stigma and discrimination faced by people with sickle cell in Uganda.
Yet once armed with scientific fact as to the cause of sickle cell disease, Ruth Nankanja committed herself, a number of other patients together with several health workers in order to change this state of affairs.
Sickle Cell Association of Uganda is now the only grass roots organisation representing the interests of patients in Uganda. We strive to change the perception that the majority of the population has in Uganda about the disease - that those who have this disease are worthless people in society, worth stigmatising and discriminating against. Through counselling and education we strive to improve the lives of these families.

The Sickle Cell Association of Uganda concludes:

The only Sickle cell Clinic is in Mulago Hospital yet Sickle cell disease is widely spread throughout the whole country. Awareness is still low because the Sickle cell Association of Uganda, which is carrying out this activity, has limited funding and only manages to reach out to few communities. However, Sickle cell is a forgotten enemy which desperately needs to be addressed.

Once again PWDs carry a significantly greater burden because of feelings of worthlessness, stigmatization and discrimination associated with SCD. This will be intensified by the stigmatization and prejudice PWDs already have to face.

Life with dementia

A very insightful documentary examining life with dementia.

The classic signs of dementia are described. 

People with dementia can wander away from the secure environment of their home. Outside of the secure environment they are confused and vulnerable. 

The person with dementia requires time and patience from their carer. Reminders from this person's past like the songs the lady in the video sings are vital links to failing memories and very good therapy.

Above all the person with dementia needs love, kindness and reassurance to live in a confusing world....

Dementia in Uganda

The Alzheimer's Association defines dementia as

a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer's is the most common type of dementia.
Dementia is not a specific disease. It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. Alzheimer's disease accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies.

There are several conditions that can cause dementia. A Case of Alzheimer’s Dementia in Uganda lists some of the most important:

Alzheimer’s disease
vascular dementias infections (commonly HIV and Syphilis) substance abuse (alcohol) trauma (road traffic accidents) nutritional deficiencies (vitamin B-12). 

A 1996 Ugandan study, Prevalence of dementia in an elderly rural population: effects of age, sex, and education, found that dementia affects 8% of the elderly population over 64 years. Dementia affects men and women equally. The numbers of those affected increases increases with age. Assuming a population of 38,000,000 of which 3.1% are 65 years or over there are 94,240 elderly people with dementia.

The story does not end there. Sub-Saharan Africa has a very high number of HIV/AIDS cases.

In 2007 Johns Hopkins published the following article, HIV Dementia Alarmingly High in Africa:

In the first study of HIV dementia on the African continent using rigorous neurological and neuropsychological tests, 31 percent of a small but presumably representative group of HIV-positive patients in Uganda were found to have HIV dementia, according to Ned Sacktor, M.D., a Johns Hopkins neurologist and senior author of a multi-institutional study that will be published Jan. 29 in Neurology...“If the rate we saw in our study translates across sub-Saharan Africa, we’re looking at more than 8,000,000 people in this region with HIV dementia,” says Sacktor.

Sacktor says an extremely high rate of HIV dementia in Africa and other poor regions of the world adds enormously to the social and economic burden of their populations and governments. Dementia not only disrupts jobs and adds to the cost of care, but also interferes with a patient’s ability to adhere to a regular course of antiretroviral medication, thus increasing the risk of drug resistance. People with dementia also are less likely to practice safe sex.

Before antiretroviral medications were available in the United States, the U.S. rate of HIV dementia was similar to what was discovered in this study in Uganda, says Sacktor. Unfortunately, he says, only 20 percent of people infected with HIV in the world are getting treatment.

“We hope studies like these will shed additional light on the devastating problem of HIV in resource-limited countries like Uganda and encourage more programs that bring much-needed medication to these poor regions of the world,” Sacktor says.

Sacktor says there’s little accurate data about HIV dementia patients in other parts of the world current estimates of the number of HIV-positive patients who have dementia range from 9 percent to 54 percent.The number of persons with HIV/AIDS related dementia surpasses the number of elderly with dementia. 

In Uganda dementia is not only a disease of old age. The high prevalence of HIV/AIDS means there is a large number of people that are suffering from the effects HIV/AIDS related dementia. A 2013 Ugandan study, Prevalence and factors associated with probable HIV dementia in an African population: A cross-sectional study of an HIV/AIDS clinic population estimates that 64.4% of HIV positive people have signs of dementia. Assuming a population of 38,000,000 and 7.3% of the population affected by HIV/AIDS there are a further 1,775,360 persons suffering from the effects of dementia.

In 2015 there were an estimated 46,800,000 people living with dementia in the world. With 1,775,360 HIV/AIDS related dementia cases Uganda has almost 4% of the worlds dementia cases.

For more information about dementia see the Facebook page of the Dementia Foundation of Uganda.

For more information about the elderly with dementia see Uganda Reach the Aged Association (URAA) on Facebook or go to the Uganda Reach the Aged Association (URAA) website.

Youth with Disability 2012 Declaration on HIV/AIDS

This is the text of the The Washington DC Declaration PLUS: Including the Invisible 15 Percent read by youths with disability:

The official Washington Declaration emerging from this conference is calling for an “end to stigma and discrimination” but so far, these phrases have never been about us. We are participants in the first-ever Disability and HIV Leadership Forum and a delegation of youth with disabilities attending AIDS 2012. We are students, activists, advocates, organizers, and leaders. We have traveled to this conference from Barbados, Ethiopia, Guyana, Jamaica, Kenya, Malaysia, Mali, Mongolia, Namibia, Nepal, Rwanda, Serbia, Sudan, Tanzania, Thailand, Uganda, United States, Uruguay, Zambia, and Zimbabwe. We are a small group, but today we are a voice for 15 percent of the world’s population: the one billion people in the world with disabilities.
We are deeply concerned that people with disabilities remain at a heightened risk of acquiring HIV. The Convention on the Rights of Persons with Disabilities codified the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability – yet people with disabilities remain marginalized or excluded from HIV prevention, treatment, and care.
We are pleased that 153 countries have signed the Convention on the Rights of Persons with Disabilities, and that 117 of these countries have gone one step further and ratified the Convention. We acknowledge that steps taken in recent years have made International AIDS Conferences more accessible for people with disabilities. Yet we know that much more remains to be done.
At the 19th International AIDS Conference in Washington, DC, USA, We call f o r t h e f o l lowing:

1. A plenary at the 20th International AIDS Conference, in 2014, that finally addresses disability and HIV and finally includes speakers with disabilities.
2. The creation of global HIV prevention and treatment goals that do not exclude anyone with a disability, that ensure access to prevention and treatment for people with disabilities, and that take our specific needs into consideration.
3. National, regional, and international HIV plans that ensure the active and full participation of persons with disabilities.
4. The collection of data about people with disabilities to better determine our HIV risk, and the involvement of people with disabilities in HIV research. Governments cannot claim to “Know Your Epidemic” if they don’t know how HIV is affecting people with disabilities.
5. The recognition of people with disabilities as a most-at-risk population, and the inclusion of people with disabilities in UN reports on HIV.
6. The commitment and guarantee of national and international donors to provide funding specifically targeted to address the needs and fulfill the rights of persons with disabilities.
7. The commitment and guarantee of national and international donors that 15 percent of the beneficiaries of HIV-related programs and services will be people with disabilities, reflecting the percentage of people with disabilities in every community. 
8. Ratification of the Convention on the Rights of Persons with Disabilities by every country in the world.
9. Implementation of the Convention on the Rights of Persons with Disabilities into all national legal systems, and timely reporting by governments to the Committee on the Rights of Persons with Disabilities.
10. Nothing about us without us: the full, active, and meaningful inclusion of people with disabilities in the design, implementation, monitoring, and evaluation of HIV prevention, care, and treatment programs.

HIV/AIDS and Disability in Uganda

HIV or the human immunodeficiency virus is the cause of AIDS or acquired immune deficiency syndrome. The HIV virus attacks the immune system destroying one type of while blood cell called the T-cell or CD4 cell. In the human body white blood cells help protect against infection. With the CD4 cells diminished or absent it becomes possible other infections to come.

Scanning electron micrograph of HIV-1, colored green, budding from a cultured lymphocyte magnified more than 2,300 times.

HIV infection attacks the human body in 3 stages (see AIDS.GOV and Wikipedia):

1. Acute infection - Large amounts of the virus are produced. The infected person may get flu like symptoms. Most of the virus is destroyed but some survives.
2. Clinical latency - the infection slowly kills CD4 cells. You can be infected for up to 10 years without any signs of infection.
3. AIDS - the group of illnesses that can infect a person when the CD4 cells are destroyed by the HIV virus . 

At all stages the infection can be kept under control by various interventions like taking medications like antiretrovirals as prescribed by the doctor or healthy diet.

You can hug someone with HIV/AIDS because the HIV virus is found in the blood and sexual fluids. The HIV virus is spread in 3 ways:

1. Sexual activity when you come into direct contact with blood, semen or viginal fluids especially during unprotected vaginal, anal or oral sex
2. Blood to blood, the HIV virus cannot pass through unbroken skin
3. Mother to baby either while the baby is in the womb, being born or being breast fed

The National Union of Disabled Persons in Uganda (NUDIPU) gives the following insight into the numbers of persons infected with HIV:

Little attention has so far been given to the risk of HIV/AIDS and the unique challenges faced by persons with disabilities (PWDs) in Uganda. A number of damaging misconceptions are still common, for example that disabled people are not at risk of HIV as they are not believed to be sexually active or at risk of violence and rape. Yet, existing evidence points in the exact opposite direction, namely that disabled people are actually at increased risk for every known risk factor of HIV/AIDS.
Recent studies conducted in Uganda indicate that 38% of women and 35% of men with disability reported having had a sexually transmitted disease (STD) at one time, which should give rise for concern considering the high correlations among STDs and HIV/AIDS. Other studies show that women with disabilities are more vulnerable to sexual abuse and consequently transmission of HIV than non-disabled women due to vulnerability, stigmatisation and people’s prejudices.
The recent house hold survey (2011) indicates that HIV/AIDs is on the increase with prevalence rate being at 7.3% up from 6.4%. In spite of this, however, no national study has established the prevalence among PWDs in Uganda.

As well as affecting PWDs, AIDS can also cause disability from opportunistic infections (OIs), (see HIV/AIDS & Disability: Three Country Studies South Africa, Uganda, and Zambia). Examples of OIs are:

Sight: Cytomegalovirus occurs in people with advanced HIV illness and can lead to loss of sight and even blindness by damaging the back of the eyes; the herpes virus can also endanger vision; and cryptococossis (CC) can lead to blindness.
Speech: Lymphoma may start in the brain and cause speech impairments.
Physical mobility: Toxoplasmosis of the brain and progressive multifocal leucoencephalopathy, both of which affect only people with HIV, can cause stroke/seizures and affect mobility; peripheral neuropathy, which causes painful tingling in the feet and hands, can also impair movement; dementia can cause loss of movement, motor clumsiness, and even paralysis.
Mental functioning: Dementia can lead to loss of memory, attention, and ability to communicate; toxoplasmosis can lead to seizures, as can lymphoma if it affects the brain; CC can lead to confusion, seizures, abnormal behavior, hallucinations, and psychiatric symptoms.
Mental health: Research has found that patients with HIV infection are at increased risk of mental disorders (Owe-Larsson et al. 2009) and that as many as one in three persons with HIV may suffer from depression (Bing et al. forthcoming).

A consequence of becoming disabled by HIV/AIDS is that there is very little information available about services for the disabled.

PWDs are some of the most vulnerable people in Ugandan society. There are no statistics for HIV/AIDS for PWDs. However PWDs report a high in of STD. The high correlation between STDs and the incidence of HIV/AIDS makes a strong case for believing that HIV/AIDS incidence is under reported for PWDs. 

Furthermore PWDs have to face stigma and prejudice. The stigma and prejudice are doubled if they have HIV/AIDS. Moreover if they are a woman that has been sexually abused or raped their burden of prejudice and stigma is tripled.

Grace is a blind woman who doesn't have a lock on the door of her house. 

This double amputee runs a nursery business

He planted 7,500 trees in the last year:

George Wamatake is a tree nursery operator in Mbale, Uganda. He is also a multiple amputee. This doesn't stop him; he continues to plant thousands of trees every year to help his community and tackle climate change.

Amputees in Uganda

There are 2 types of amputee, those who have had a limb removed or those people born deficient in limbs. These are defined as:

1. Amputation is the removal of all or part of a limb by a surgical process. Amputation of the leg, above are below the knee is the most common form of surgical removal. 
2. People who are born with all or part of a limb not developed are congenital amputees.

There are many reasons for limb amputation. Some of these are listed here: (see Wikipedia):

Complications of diabetes
Removal of cancerous bone or soft tissue
Severe limb injuries
Limb deformities
Infection of bones or soft tissue

Statistics for amputations vary between countries. It is also difficult to find accurate statistics for Uganda. It is generally accepted that amputation has has a base figure of 1.5 per 1,000 people worldwide (Estimates of Amputee Population). A review of worldwide literature found that congenital amputation is between 1.2 and 4.4 per 10,000 births (Epidemiology of limb loss and congenital limb deficiency: a review of the literature).

With artificial legs this man can show that disability is not inability

In the absence of statistics from Uganda these figures from Kikuyu Hospital, a rural hospital in Kenya, give some idea of the causes and numbers of amputations. Limb amputation records were examined between October 1998 and September 2008:

One hundred and forty patients underwent amputation. Diabetic vasculopathy accounted for 11.4% of the amputations and 69.6% of the dysvascular cases. More prevalent causes were trauma (35.7%), congenital defects (20%), infection (14.3%) and tumours (12.8%). Diabetic vasculopathy, congenital defects and infection are major causes of amputation. Control of blood sugar, foot care education, vigilant infection control and audit of congenital defects are recommended.

Again, in the absence of data from Uganda these figures from a city in the Democratic Republic of Congo, Kisangani Clinical University, General Hospital Makiso-Kisangani and Kabondo Reference General Hospital from 1st January 2005 to 31st December 2014 provide an interesting contrast. 62 cases of amputation were analysed:

The prevalence of 14.69% of all interventions of limbs. The age group of 57 - 75 years is the most concerned and the male/female sex ratio is 2.9/1. The unemployed are most affected 51.6%. The lower limb is concerned in 88.7%, including 30.6% in the lower leg and the right side is 56.5% of cases. Diabetic gangrene (30.1%) was followed by traumatism (27.4%). The mortality rate is 17.8%.

The report concludes

The adult male is most affected. Diabetic gangrene and open fractures are the most encountered causes. Mortality is high. The early management of diabetics and open fractures is recommended.

Road traffic accidents are a major reason for amputations, on the 6th March 2016 the following article was printed in the Daily News:

The rise in the number of accidents, owing mostly to increased use of motorcycles as a major means of transport, has led to over 150 per cent more surgeries including amputations. Some analysts say the cost of rehabilitation and prosthesis going is now at the tune of 3.5m/- per person.
Statistics from 2016 edition of the 'On the move', a local magazine on road safety in the country cited that in 2008 there were a total of 20,615 accidents that resulted in 2,905 deaths and 17,861 injuries and in 2011 this number shot to 24,665 accidents, 3,582 deaths and 20,656 injuries but saw a significant drop in 2015 where there were 8,337 accidents, 3,468 deaths and 9,383 injuries.
The World Health Organisation's (WHO) global status report on road safety 2015 cited that some 1.25 million people die each year as a result of road accidents despite improvements in road safety.
Responding to gravity of most accidents, Ms Mamseri said that some of amputations are done at the scene of the accidents even before reaching the hospital, while others develop infections due to maltreatment in the areas they first receive the initial treatment and some are severely injured resulting to an amputation.
According to the Digital Resource Foundation website, the numbers of amputees in the developing world are truly staggering. Vietnam is commonly reported to have 200,000 amputees; Cambodia, 36,000; Angola, 15,000; Uganda, 5,000; Mozambique, 8,000 and so on. The accuracy of these figures may be questioned since most field survey research is incomplete.
However, amputations performed for traumatic injury in the developing world are significantly higher than in the modern world.

In a rural setting diabetes and congenital defects are a major cause of amputation. Whilst in the city diabetes  and open fractures are a problem. Both the above reports conclude that more education about diabetes and its complications is necessary. 

There is an organization for amputees in Uganda. Rock Rehabilitation - Uganda has the stated aims

• To increase awareness of limblessness and what it means for sufferers in Uganda.
• To promote worldwide the rehabilitation of persons who have suffered the loss of limbs 
• To enable the development of services to assist in this rehabilitation by offering training and general education to professionals, orthopedic and prosthetics opportunities, general life skills services
• Set up rehabilitation centres in countries where provision is wanting, eg: Uganda

Rock Rehabilitation - Uganda describes the reality for amputees in Uganda:

They’re many who have lost limbs through car accidents, land mines, war injuries, industrial accidents. Amputation is undertaken in a general hospital or by a local herbal doctor if hospital fees can not be afforded. The Ugandan view is that if you lose a limb you have lost your life; there is no expectation of life capability.

Attitudes must change. Disability Support Uganda is working with amputees to show that disability is not inability. People with disabilities (PWDs) can make an effective contribution to the Ugandan  economy and society with the right equipment.

More about Little People of Uganda

Annet Nakyeyune Tibaleka says she was forcefully sterilized by her family at the age of thirteen because they didn't want her to have another child like Love Anne-Marie.

VOA's Ndimyake Mwakalyelye reports on dwarfism in Uganda and later talks to Annet Nakyeyune Tibaleka, Founder/Executive Director, Little People of Uganda and her daughter Love Anne-Marie.

Little People in Uganda

Dwarfism is the medical name for people of short stature also known as little people. Dwarfism is defined as being less than 147 centimeters tall due to some kind of medical condition. The correct way to refer to people with dwarfism is little people, although little people do have names.

There are more than 300 distinct types of dwarfism. Approximately 70% or 7 out of every 10 little people have one type of dwarfism called achondroplasia. In this condition the bones do not grow in length correctly. However the bones grow normally in other respects. 

Annet Nakyeyune Tibaleka the Founder

Little People of Uganda with her daughter

Love Annmarie

Most of the conditions that cause short stature cannot be treated, though a few may be treated with growth hormone or bone surgery. Growth hormone will only work if the person has not stopped growing.

It should be noted that short stature without a medical disorder is not considered dwarfism. The Batwa and other pygmy groups are smaller than average. They cannot be considered to have dwarfism because they are proportionately smaller.

Achondroplasia is rare, with about  4 to 15 births per 100,000 (Wikipedia) having the condition. Based on a population of approximately 38,000,000 people. I estimated there are between 1,520 and 5,700 little people in Uganda.

Dwarfism does not affect intelligence. Little people are normal people that have short stature and the consequences of short stature.

The most severe consequences of dwarfism are probably psychosocial, the attitudes of society which may be more disabling. In an interview in the Daily Monitor, Joel Musana, who is 32, and works as a liaison officer at Little People of Uganda, a non-government organisation advocating the development and rights of little people, tells the following story about the

time he applied for a job in a bank after completing his studies at university but was denied the job despite having the necessary qualifications.
“I was very hurt. After the interview, I told a former coursemate about it. He had not applied for the job yet I had performed better than him but when he walked there a few days later, he was given the job.”
He gives another example of how he went to Mulago hospital for treatment only to be ignored by a health worker who thought he was a child simply because he was shorter than the counter at the reception. It took the intervention of a guard for the receptionist to attend to him. 

The author of this interview notes that these are common occurrences for little people, Joel Musana rapidly gave 15 examples of prejudice and stigma during the course of the interview.

Annet Nakyeyune Tibaleka the Founder of Little People of Uganda says the following

“Whenever you find yourself in a situation that is prone to misconception, which in most cases breeds stigma, seek to know as much as possible about that situation. It is only until you overcome ignorance, stigma, shame and denial, then can you be able to fight for the rights of others in similar situation”. 

One man's battle against PTSD

A very good introduction to post traumatic stress disorder. NTV Uganda describes the video:

Experts at the World Health Organisation say more than 200 million people globally suffer from symptoms of Post Traumatic Stress Disorder annually. The condition makes many of its sufferers experience flash backs and nightmares, while others become aggressive and withdraw from society. In this week’s Health Focus, Florence Naluyimba brings us a story of an 18-year-old man in Pader district who’s slowly recovering from the condition.

Mental Health: Post Traumatic Stress Disorder

In their paper Post Traumatic Stress Disorder – A Northern Uganda Clinical Perspective the authors give the following definition:

Post-Traumatic Stress Disorder (PTSD) is a psychiatric condition, which develops after a person experiences, witnesses, is confronted with or hears about emotionally stressful and painful experiences beyond what a human being can bear. The traumatic event may be life threatening; threatens body integrity and causes considerable fear, horror and a sense of helplessness in the affected individual (APA, 1992). Traumatic events are psychologically wounding to the individual and leave deep scars (Anonymous, 2009; and Tonks, 2007) on trauma victims; they are dehumanising, demoralising and humiliating, and may put an abrupt end to the hopes and plans of an otherwise enterprising individual, as the individual loses the sense of the future (Bardin, 2005) as one of the clinical features of post-traumatic stress disorder.

Another study notes that PTSD

is the most common mental health condition in the aftermath of traumatic stress. PTSD prevalence rates depend on cumulative trauma exposure and converge around 8% in the United States, whereas the disorder occurrence is much higher in post-conflict settings.

Statistics for PTSD for the general population are hard to find. The Victimization and PTSD in Ugandan Youth study of youths aged between 13 and 24 years in the major cities of Kampala, Mbarara, and Jinja found that there was a prevalence rate of 37.7% with PTSD. A further 28.2% of its sample had subclinical signs of PTSD. 

There is a well established link between warfare and PTSD. It is no surprise that in a report on High rates of PTSD and depression found among adults displaced by war in Uganda researchers found that three quarters of respondents, 74.3%, met PTSD criteria. A further 44.5% or almost half the respondents had depression.

Without treatment PTSD can become chronic causing severe impairment in daily functioning. There is a further higher risk of physical illness and suicide. 

The study PTSD – A Northern Uganda Clinical Perspective identified the following common symptoms:

Post-traumatic stress disorder usually presents with vegetative symptoms of depressive and anxiety disorders or alcohol use disorder symptoms. Patients may complain about poor sleep due to dreams involving the dead beckoning them unto death. Direct inquiry about probable history of exposure to a traumatic event is required as dreams about the dead may be a significant sign of depressive disorder, anxiety disorder or PTSD representing intrusive thoughts. Sometimes patients may complain about having many thoughts or thinking too much. Too many thoughts may mean being worried, and signify depressive disorder or an anxiety disorder, particularly in association with frightening dreams in which the dreamer is visited by dead relatives, is chased by enemies/armed men, or is involved in battle.

However too much thoughts may be an idiom for intrusive thoughts seen in post-traumatic stress disorder. Individuals may be described as preferring to be alone, and this description is the equivalent of loss of interest in social contact and pleasurable activities as in  depressive disorder or post-traumatic stress disorder; it is not uncommon for post-traumatic stress disorder and depression to co-exist in the same patient. Such individuals are usually intolerant to conversations that might remind them of their traumatic experiences, and may exhibit considerable levels of irritability and may therefore not wish to participate in conversations with family and friends. Individuals who prefer to be alone following exposure to traumatic events also exhibit episodes of depersonalization with aggressive outbursts. The triad of social isolation, depersonalization and aggressive outbursts is so characteristic of former rebel soldiers in northern Uganda that some communities readily recognize the psychological instability in affected individuals and often arrange a quiet room for the victims to rest before they can rejoin their peers in social activities.

In the study of PTSD – A Northern Uganda Clinical Perspective the outcome for those with PTSD in Uganda was optimistic:

... clinical experience indicates that most individuals with the disorder recover on two to six sessions of counselling. It is possible that the ubiquitous social support available to people in their communities contributes to the apparent good prognosis for victims of traumatic experiences in rural Uganda. Ovuga et al (2008) have reported that former child soldiers in northern Uganda who returned to their homes without passing through government established reception centres had lower mean scores on the Harvard Trauma questionnaire and the Hopkins Symptom Checklist for depression. Ovuga and colleagues attributed their observation on the possibility that the child soldiers who went directly to their communities had committed fewer atrocities, were more readily received and forgiven by their respective communities, and possibly experienced fewer traumatic experiences than their colleagues who returned home through the government reception facilities.

PTSD is a mental health issue that has ramifications for the whole community. Prompt identification of symptoms and treatment are of vital importance. It is not only people from war torn areas that may suffer the effects of PTSD. We should never lose sight of those that have had traumatic experiences in all walks of life.

For further information refer to Facebook - Uganda PTSD Alliance and  Twitter - Uganda PTSD Alliance.

Health workers talk about spina bifida

Ugandan's that work with spina bifida children speak about their work.

Children live longer if the services provided in the community are used.

Spina Bifida in Uganda

Spina bifida is the most common neurological birth defect in the world.

Neural Tube Formation

During the first 4 weeks of pregnancy the developing embryo forms a plate that folds to form a tube, this is the neural tube. That tube forms the basis for develop of the brain and central nervous system. 

Failure in closure of the neural tube causes spina bifida.

Once the defect is there the developing spinal cord is exposed and becomes damaged leading to paralysis and other complications like hydrocephalus and club feet.

This video is a very good introduction


In Uganda the incidence of spina bifida is estimated to be 1,400 births per year, (see Prevention of spina bifida: folic acid intake during pregnancy in Gulu district, northern Uganda).

There is no cure for spina bifida. However, it can be prevented. Adequate intake of folic acid during the 3 months before and  3 months  after pregnancy will prevent spina bifida.

The supplementation of diet with folic acid is a human rights issue (see Vector, the Boston Children's Hospital's science and innovation blog):

In Uganda, where rates of hydrocephalus and spina bifida are high, children with deformities or disabilities from these conditions have two to three times the overall child mortality rate, noted neurosurgeon Benjamin Warf, MD, of Boston Children’s. Warf recently reported that access to community-based rehabilitation after hydrocephalus surgery increased five-year survival from 50 to 84 percent. “This is a human rights issue,” he said.

Undoubtedly investment in unborn children is the key to the future:

“To say that spina bifida and hydrocephalus are not a priority is a euphemism,” said Lieven Bauwens... “If people don’t believe in these children, there is no investment in their care, and that will lead to major negative outcomes and more negative thinking.” (see Vector).

Your children are your future. To ensure your child does not get spina bifida take folic acid regularly during the 3 months before and during the 3 months after pregnancy.

Uganda: Living with cerebral palsy

Shamim Nantamb talks about her life with cerebral palsy

Young man with cerebral palsy

Disability Support Uganda posts its first video to YouTube.

The young man in this video has cerebral palsy (CP). He mends shoes to earn a living showing that disability is not inability.

Cerebral Palsy in Uganda

Cerebral palsy or CP is the name given to a group of disabilities that are caused by damage to the areas of the brain and nervous system that perform movements. The injuries happen perinatally (around the birth, from 5 months before birth to one month after birth). The injuries  may be caused by various insults (illnesses or damage) to the mother and/or baby.

There are 4 major subtypes of CP

Spastic - Where muscles are stiff and movement is difficult
Athetoid - Difficulty in movement and control of limbs noticeable when the person moves
Ataxic - When limbs and muscles move involuntarily
Mixed - Is a mixture of all types of CP: Spastic, athetoid and ataxic

The number limbs affected varies:

Quadeiplegia - affects all four limbs and trunk of the body
Hemiplegia- affects limbs on one side of the bodyDiplegia - affects the legs
Monoplegia - affects one limb
Triplegia - Either 2 arms and one leg or 1 arm and 2 legs

As well as affecting the limbs of the body there might be other symptoms associated with poor muscle control:

• Difficulty eating, swallowing, speaking, moving the tongue
• Difficulty hearing - the small muscles of the inner ear are affected
• Difficulty seeing - focusing, adjusting to light and dark, and coordination and movement  of the eyes
• Difficulty with digestion, bowel movements, passing urine.

Figures  for those affected by CP are hard to come by in Sub-Saharan Africa and any figures may be inaccurate. It is estimated that 776 children are born affected with CP every year in Uganda (see Statistics by Country for Cerebral Palsy). The Center for Disease Control estimates that in developing countries around 1 in 323 children has CP.

DiSU President Atugonza Jacqueline watches a young man with CP fixing shoes.

Cerebral Palsy Africa says:

Children with cerebral palsy have damage to that part of their brains that enables them to move and hold positions. This means that from when they are born, or when they have an illness such as meningitis or cerebral malaria early in life, they lack the ability to learn to hold themselves steady and move in purposeful ways.If they have physiotherapy or occupational therapy from very early in their lives they can be helped to hold themselves upright and move purposefully but if they do not they can become stiff and immobile and it is difficult for them to lead independent, satisfying lives.It is also crucially important that at home the children can be placed and supported in sitting and standing positions before they are able to hold themselves in these positions. When they are upright they can see what is going on around them and they also learn to take weight on their limbs. Special chairs and standing frames need to be available at affordable prices that families can use for the children at home.Besides the movement disorders children with cerebral palsy can also have other problems. These may include epilepsy, learning difficulties, impairment of hearing or vision and difficulty in learning to speak even when they have normal intelligence. But it is also important to remember that many children with cerebral palsy have no learning difficulties and might even have exceptional intelligence.Eating and drinking can be a big problem for many children with cerebral palsy because of difficulties with coordinating the muscles that are needed for safe chewing and swallowing. Without specialist help many mothers struggle to feed their babies and this adds greatly to the stress of caring for such children.

Cerebral Palsy in Africa

In African countries, if there are no services offering therapy for children with cerebral palsy, their families may feel there is no hope for their children. This makes them feel ashamed that their children cannot move around normally and they may keep them indoors where they have little chance of learning to sit up and move around. This puts them in great danger of developing the secondary problem of shortened muscles and deformed bones and then it will be even more difficult to help them. Their families will have to devote a good deal of their time to taking care for them.In Africa, there are many children with cerebral palsy. The numbers are not known for certain but the WHO estimates that it is likely that one child in every 300 will have it. This is because maternity services are often quite poor and mothers do not get enough care before and during the birth of the baby. The damage can happen for many reasons for example caused if the baby cannot breathe quickly after being born or if the blood supply to the baby before birth is insufficient. Cerebral palsy can also be caused by the baby getting meningitis or cerebral malaria soon after birth and these diseases are very common in most African countries.

Assistive Technological Devices

If children with cerebral palsy are to develop their potential and avoid secondary problems, it is important that they are able to sit or stand without needing to use their hands. Specially designed furniture can provide the right support but the cost of such furniture, if conventionally manufactured, is beyond many families.Part of Cerebral Palsy Africa is the Paper Furniture Social Enterprise that runs appropriate paper-based technology (APT) training courses. These courses train people to make the special chairs and standing frames that children with cerebral palsy need using techniques based on engineering principles that make weak paper and cardboard into strong robust affordable supportive equipment. can be made from paper and cardboard.More information about this programme is on the APT page.

CP presents many challenges to families. With a good understanding of the issues a child with CP can be helped to lead a useful and productive life.