Genetic disorder leaves 5 family members blind

Thursday February 27 2020

Visually impaired. Ms Harriet Nalubega (right),

Visually impaired. Ms Harriet Nalubega (right), her daughter Rachael Naligwa and the three grandchildren in Yandwe Village, Kakabala Parish in Butuntumula Sub-county, Luweero District. Photo by Dan Wandera 


Ms Harriet Nalubega, 60, faces a complex situation of coping with visual defect and protecting from stigma her family members, who also suffer from the same condition.
Ms Nalubega’s daughter, Rachael Naligwa, 27, and grandchildren – Robert Kitandwe, 10, Dalton Ssenkungu, 5, and 3-year-old David Lule Mukunzi – all suffer from complicated eye defects, a condition that has taken a toll on the family of five.
In Yandwe Village, Kakabala Parish in Butuntumula Sub-county, Luweero District, where they live, Nalubega says her family is often demeaned and called names due to their condition, which has left them totally blind.

Dr Naome Nsubuga, an optometrist at Brien Holden Visual Institute, terms the condition as congenital blindness. The condition, according to Dr Nsubuga, is rare and is often neglected yet it requires maximum attention in terms of rehabilitation of the remaining sight after visiting special eye clinics for attention.
“We need more awareness campaigns for the eye defects and possible assistance for the victims. We have the genetic counselling programmes that can be offered to avoid more cases of people getting caught up in this complex visual problems,” Dr Nsubuga says.

Dr Nsubuga says cases of people suffering from congenital blindness are rare but real, adding: “This is a case of a three-generation blindness. This family needs healthcare, they need food and should be helped to have these children taken to school. When these children don’t get a chance to go to school, they will be a burden to society and continue living a miserable life.”

Ray of hope
Ms Nalubega is, however, happy that she has for the first time in her life been given a white cane under a special needs programme coordinated by the Ministry of Gender, Labour and Social Development through the Brien Holden Vision Institute. The programme includes training on how to use the white cane, which is a device used by people who are visually impaired to aid their movement.
This comes as a big relief to Ms Nalubega, who says officials from Luweero District administration picked interest in her family’s plight on February 20 and they were among the people who received white canes to facilitate their mobility.
“While I have hope that possibly my daughter and the three grand children could one time have the opportunity of regaining their lost sight, the medics ruled out my opportunity to undergo a sight correction operation because of my advanced age,” she says.

The family says while they sometimes hear about members of their community accessing government programmes and help from NGOs such as health camps where they could have benefitted, their family was for a long time unable to get the help they needed.
“Mr Joseph Muwonge, the district focal person for people with disabilities, promised to make a follow up on our family and ensure that we are incorporated in benefiting from the special grant funds from the Gender Ministry to help us start some income-generating projects,” Ms Nalubega said.

While Ms Nalubega struggled to raise her daughter Naligwa with their visual impairment, Ms Naligwa has a much bigger burden of fending for her three sons, who are also blind after their father reportedly refused to take responsibility.
One of Naligwa’s sons was recently admitted to Primary Two at Balitalwogi Primary School in Butuntumula Sub-county, about 7kms from their home in Yandwe Village. Naligwa is, however, doubtful about her son’s prospects of attending school given the distance he has to walk to school each day and the family’s inability to cater for his education.


Nalubega’s efforts to engage in projects to boost the family income have, however, been frustrated by thieves who steal whatever she puts in place.
“I tried to rear some pigs but unfortunately each time they matured, they were stolen. Even the local chicken that I tried to rear were taken away by people I could not identify,” she says.

Call for help
The Luweero chief administrative officer, Mr Godfrey Kuruhiira, tasked community leaders and residents to help the disadvantaged in their respective communities.
“The community should not live silently in circumstances where we have such people who need assistance. It is unfortunate for this particular family, but I believe the responsible department has taken up the matter for possible assistance.
“I also advise people living with disabilities not to lose hope and not continue living with dependency syndrome. They need guidance on generating income…,” Mr Kuruhiira said.

Vision loss
According to statistics from the gender desk at Luweero District, about 400 people suffer complete vision loss and hundreds of others are experiencing partial vision complications.
The district has no statistics on genetic blindness, making the five family members the first registered cases although Mr Muwonge believes the number could be higher since there may be other cases that have not been captured.
“I have already interacted with this particular family and hope to make a follow up on how we can help them under the special grant fund. We shall try to integrate them into the existing groups with a membership of 10 people. We have already observed that they can do some crafts,” he says.
Records from the Health Management System indicate that between 300,000 to 350,000 people in Uganda are blind, and more than 1.2 million are visually impaired.

Can the blind hear better?

There is an often-quoted view that a blind person’s remaining four senses are heightened to compensate for their lack of vision.
Researchers at the University of Montreal, US in 2012 suggests that a blind person’s brain does re-wire itself to use the visual cortex. Normally preoccupied with seeing, it is hijacked to improve the processing of other information such as sound and touch.

Danish researchers in 2014 also found out that as time passes, a blind person is less likely to dream in pictures. People who were born blind have no understanding of how to see in their waking lives, so they can’t see in their dreams. But most blind people who lose their sight later in life and can dream visually.