People living with Down syndrome are more vulnerable to COVID-19, which should be enough reason for them to be among the first groups to receive the vaccine, said Ancella Ramjas, National Executive Director of Down Syndrome South Africa (DSSA).

“The evidence is there that they are vulnerable, and it is sad that if they are hospitalised, they are ten times more likely to die. And I think we should do everything in our power to try and persuade the decision that our kids at least above 18 should be considered first,” said Ramjas, speaking during a webinar hosted by the South African Non-Communicable Disease Alliance last week.

Next month, the National Department of Health will begin the second phase of the COVID-19 vaccine rollout. It will prioritise essential workers, persons in congregate settings and persons over 60 years, as well as  adults with comorbidities. DSSA is advocating that people with Down syndrome be among this cohort for the second phase of the national vaccination programme.

“Most of our children live in overcrowded dwellings, they also live with elderly parents. And where they are no parents, they are being cared by their grannies, which are also at high risk of the virus, meaning exposing the younger kids with Down syndrome to the virus,” Ramjas said.

More vulnerable during the pandemic

Down Syndrome is a genetic condition caused by a full or partial extra copy of chromosome 21, commonly referred to as trisomy 21. This extra chromosome causes a certain facial characteristic, alters the course of physical development and causes intellectual differences.

People with Down syndrome often have compromised immune systems and experience illnesses like dementia, spinal problems, leukaemia, obesity and sleep apnoea. A further 50 to 55 per cent of children with Down syndrome have congenital heart conditions.

During the COVID-19 pandemic, children with Down syndrome also struggled with the non-pharmaceutical interventions aimed at curbing the spread of the coronavirus. Many struggled to wear masks for long periods and were cut off from educational and social groups.

“Many of our children are being forced to stay at home for non-compliance of masks wearing and this is due to sensory challenges, a lot of our kids struggle to wear masks for continuous hours for the entire day,” said Ramjas. “Children and adults with Down syndrome generally struggle with communication and the wearing of face masks further hampers their ability to communicate as well as interpret language through facial expressions.”

Personal experience

Ramjas herself has a 24-year-old daughter with Down syndrome, and saw how the pandemic affected her child.

“Being a parent, I have personally seen how the pandemic has negatively impacted on my daughter’s life and this is something experienced by many families. Prior to COVID-19, my daughter had a life surrounded by family, she had made friends at her place of work and her life had purpose,” explained Ramjas.

“But COVID-19 took all this away, she lost contact with friends, she struggled to understand why she could not go out to see her family and work at her favourite store. She lost control on making choices of how to lead her life and this had a negative impact on her mental well-being,” she said.

A weakened support system

The lockdown also brought with it economic hardship and non-profit organisations like DSSA struggled. The organisation was founded in 1986 with aim to empower persons with Down syndrome and their families and change the public perception of the condition.

“DSSA like much many non-profit organisations were negatively impacted by the pandemic and the downright disastrous response by our South African government for families and persons with disabilities,” said Ramjas.—Health-e News