The ManicaPost
Samuel Kadungure Senior Reporter
THE Minister of Media, Information and Broadcasting Services, Dr Chris Mushohwe, has called for the allocation of public funds to bridge the critical gap in research on rare diseases that have resulted mostly from unidentifiable causes and lack of clearly curable treatments.
Dr Mushohwe made the call when he officiated at the rare diseases commemorations held by the District Outreach for Care and Support, which caters for children with muscular dystrophy – at Mt Olive Muscular Dystrophy Centre in Nyazura.
Muscular dystrophy, a genetic disease that gradually causes weakness and loss of muscle function due to lack normal dystrophin, a protein found in muscles, which helps to protect muscles from injury.
Rare Disease Day is a chance to draw attention to the research and policies needed to advance understanding of these disorders that challenge the lives of so many.
The theme for 2017 is – With Research, Possibilities Are Limitless.
Dr Mushohwe said apart from Muscular Dystrophy, there were thousands of distinct rare diseases worldwide which have genetic origins and occurring in childhood and lasting for a lifetime.
He said Zimbabwe had more than 3 500 dystrophic children – with some families nursing as many as five members and experiencing physical suffering and psychological despair due to the lack of therapeutic hope and the absence of practical support for everyday life.
Dr Mushohwe said the nation should appreciate efforts by DOCAS as Muscular Dystrophy requires a significant amount of labour for the patient’s care, causing a heavy burden on other family members, both financially and mentally.
Mount Olive Muscular Dystrophy Centre has integrated the rehabilitation and education needs of these often neglected and abandoned dystrophic children while ensuring the healthcare of inmates and families affected by the neuromuscular conditions receive is improved.
The children are accessing treatment and assistive technologies that prolong their life as well as access to advanced tests of diagnosis, which would allow them to know the specific type of MD they have, and with it to be able to know what the future will bring and the risk of passing the disease on to their children.
Dr Mushohwe bemoaned the fact that the disease affects male members of the family and is common to have families with many muscular dystrophy patients under one roof – and in most cases the patients are prone to ridicule and considered a burden.
“Some families are nursing as many as five members rendered invalid by the condition. The commitment by DOCAS, to alleviate the suffering of those encumbered by the disease through establishment of Mount Olive Muscular Dystrophy Centre and the hospital which shall cater not only for these children, but the generality of community, should be applauded,” said Dr Mushohwe.
DOCAS chief executive officer, Reverend Togara Mapingure, said the centre needed everyone’s support to enable it to provide everything required for quality life and eliminate physical barriers and deeply ingrained cultural intolerances.
Prior to rescue by DOCAS, these children were subjected to profound levels of poverty, exclusion, discrimination and such harmful practices that are rooted in traditional beliefs.
Rev Mapingure maintained that muscular dystrophy was not a curse, but a genetic condition that causes the muscles to gradually weaken, leading eventually to total disability and, in some cases, death.
“There is no cure yet for the disease, but steps can be taken to alleviate the most painful symptoms.
“These children have rights, and should not be locked in homes. As DOCAS we are there to serve and help mitigate such condition,” said Rev Mapingure.
