One of the best ways of living confidently with a disease is acknowledging that you have it and trying by all means to tackle it.
This is the clear message communicated by Multiple Sclerosis (MS) Namibia recently during their fundraising engagement session where they created awareness with the public about how it feels to live with MS.
“I was diagnosed with MS in 2007, after a long journey of misdiagnoses! The sad and shocking news of having MS and having to live with a debilitating disease for the rest of my life, made me realise, there is more to MS than just living with it. I had to do something to form a base for other MSers in Namibia, that’s when the organisation was formed,” shared Bianca Özcan, Founder of Multiple Sclerosis Namibia.
MS is a chronic disease that attacks the central nervous system, like the brain, spinal cord and optic nerves. In severe cases, the patient becomes paralysed and/or blind, while in milder cases there may be numbness in the limbs.
Özcan said: “Our main purpose is to raise awareness about MS to reach an early diagnosis and for extended longevity, however, we also support MSers and their families with information dissemination, guidance and medical equipment and supplements if and when our finances allow, seeing that MS is a rare disease, we work on an estimate of 0.001% of the total population which brings us to roughly 2 400, however, on our database we have about 50 patients.”
Last Friday’s event was a financial sponsorship handover by the FNB through The FirstRand Namibia Foundation Trust. This included a clinical talk with the public and the launch of cooling scarfs, the latter being a fundraiser.
“My idea of bridging this gap was the formation of an MS Society that can be the point of contact. We encourage all MS diagnosed persons to make contact with us, we want to help as much as we can,” Özcan told Vital Signs.
Clinical psychologist Dalene Gous who also suffers from MS, said when she was diagnosed 14 years ago, it was devastating news. “At almost 28, this was the last thing I was thinking about. I didn’t even know what the diagnoses meant, and the more I read up on MS, the less I understood the disease or felt comfortable with it.”
She said: “God’s will for me has included a diagnosis of MS, as well as four beautiful children and a husband of 20 years and still going strong.”
Gous said for all practical purposes, it felt like a death sentence, a life-long crippling disease with no logic, no clear progression and no cure.
Putting on her psychology hat, Gous said the reason why people seem to be uncomfortable with disclosing illness is due to the comments individuals might say and how different they will be treated by society at large.
“In most cases, people don’t entirely know how to react to certain information given to them and those with certain conditions like MS will be afraid of what will be said about them. It is important for people to be treated fairly,” said Gous.
She cautioned those with MS and other illnesses to not Google as that can create more fear but to consult experts. “They can talk to people with similar conditions and accept the fact that the condition is part of their lives. There is a need for them to live through their conditions instead of living around it,” she shared.
Gous said community members should acquaint themselves with conditions so that they can know how to treat people suffering or living with such illnesses.
Revonia Kahivere, FirstRand Group corporate social investment manager said the world has been focused on Covid-19 for the past two years and it almost felt as if any other diseases were non-existent.
“The past two years taught us that health is the biggest wealth for a human being. One can survive without excess money but cannot survive without good health and while money cannot buy you good health, it certainly helps to assist those in need and to lighten their burden,” she said.
Kahivere added: “That is why it is with great pleasure that we hand over an amount of N$200 000 today to MS Namibia - the only established Multiple Sclerosis organisation in Namibia. We have been part of MS Namibia in one way or another for numerous years and are privileged to be able to help.”