Learners at Bryanston High School learn about Neurofibromatosis (NF), a genetic disorder, on 17 May, which is also known as NF day.
Steve Marais, ambassador from the South African NF foundation, explained to the learners that the disease is a genetic disorder that causes tumours to form on nerve endings.
“According to the University of Tennessee, one has between 95 and 100 billion neurons or nerve cells in one’s body, and although NF is a rare genetic disorder, one in every 3 000 people has the gene.”
According to Rare Diseases South Africa, symptoms may be mild (they can either present at birth or in teen years), but complications of the disorder can include hearing loss, learning impairment, heart and blood vessel (cardiovascular) problems, loss of vision and severe pain.
The head of charity at the school Bronwyn Mackrory said, “I wanted to raise awareness of the limited knowledge of unrecognised diseases in our country, to educate our learners about what we face beneath all the larger diseases.”
The school presented the foundation with an amount of R10 000, to go towards further research of this genetic disorder.
Helen Marais of the foundation said, “It took my husband and I a while to accept the fact that our son was diagnosed with neurofibromatosis, as all we heard from our pediatrician in 2006 was that there was no cure and no medication for the progressive disorder. Our world just collapsed. We had to come to terms with a lifetime of challenges that lay ahead for our son.
In early 2017, we decided that we were no longer going be a victim to this disorder, and we’re going to assist others who had neurofibromatosis. We started making inquiries about how to start our own organisation, and after two years, here we are.
“As the NF foundation of South Africa, we are only two years old, but are completely committed to support all NF sufferers in SA to the best of our ability and resources.”
Creating awareness seems a challenge, but informing one individual makes a difference. That is how awareness grows, and before you know it, we are all advocates for neurofibromatosis, concluded the ambassadors.
Related articles:
https://www.citizen.co.za/sandton-chronicle/200131/certain-eye-problems-hereditary-environmental/
https://www.citizen.co.za/sandton-chronicle/176683/er24-makes-wishes-come-true/
