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.