First certified care centre for muscular dystrophy
THE Red Cross War Memorial Children’s Hospital has opened the first certified Duchenne Care Centre outside the US to tackle muscular dystrophy (MD), a fatal muscle disease that causes muscle degeneration.
It was certified as a Duchenne Care Centre by the Parent Project Muscular Dystrophy in October 2017, and recently unveiled a plaque honouring this.
MD is the name given to a group of more than 70 different neuromuscular disorders causing progressive wasting and weakness of the muscles.
Each type presents differently and with its own levels of complexity. The prognosis varies according to the type of MD and speed of its progression.
Some types are mild and progress very slowly, allowing normal life expectancy, while others result in functional disability and loss of the ability to walk.
The disorders are usually inherited, the defective gene passed on from one generation to the next. However, MD can also occur in families where there is no history of the condition.
Duchenne MD is the most common serious genetic disorder diagnosed in childhood. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys.
Young men with Duchenne typically live only into their late twenties, after losing the ability to walk between 10 and 14 years of age.
During August and September 2016 the Muscular Dystrophy Foundation hosted representatives from Parent Project Muscular Dystrophy from the US to present lectures about Duchenne muscular dystrophy to families.
It was during this visit that the neuromuscular service, based at Red Cross War Memorial Children’s Hospital, applied for certification as a Duchenne Care Centre.
Red Cross War Memorial Children’s Hospital head of neurology Professor Jo Wilmshurst said: “This certification confirms that the best Duchennespecific patient care and management is provided to affected boys at this centre.
“This care is in agreement with international standards.”
The Cape Town centre must ensure that this level of care is maintained to retain the accreditation.