Julina Kaakunga
Corachia Ockhuizen is actively working to increase public knowledge of the Myasthenia Gravis (MG) condition, and has launched the Myasthenia Gravis Foundation Namibia at Annas Kloovenburg in Klein Windhoek this past Saturday.
Ockhuizen has had the illness for seven years and has visited the hospital roughly 50 times, oftentimes ending up in the intensive care unit.
It has now been three years since she was admitted to the hospital. However, she is still on medication.
“Our aim for the foundation is to raise awareness and provide education support in the Namibian community doctors and families just so they can understand what the disease is and what the symptoms are because it is an invisible disease. You look okay on the outside, but inside, you need a little extra help from day-to-day tasks, so it’s important for the family to understand and know where to help you. That’s what we want to achieve,” emphasised Ockhuizen at the launch.
MG is an autoimmune disorder, where antibodies attack muscle receptors, hindering the stimulation needed for muscle contraction.
Its symptoms vary, including visual issues, muscle weakness, fatigue, facial muscle involvement, swallowing difficulties and limb weakness. Diagnosis involves a medical history review, physical exams and specific tests like blood tests, nerve studies and electromyograms.
It is incurable, but symptoms can be managed with medicines, thymectomy, plasmapheresis and immunoglobulin therapy.
Complications can lead to a myasthenia crisis, causing severe muscle weakness, especially in breathing muscles.
Precautions like proper medication, healthy lifestyle habits and avoiding respiratory infections help manage and prevent crises.
It is crucial to inform healthcare providers about the condition when taking other medications due to potential interactions.
During the launch, neurologist Dr Percy Kumire concurred that MG is a difficult disease to diagnose.
“If the doctor notices you are weak, they may give you anti-depressants for a few years until when you can’t swallow or use your eyes; that’s when it’s diagnosed,” said Kumire, one of the neurologists who helped Ockhuizen from when she was diagnosed.
He urged the public to be more aware of the disease to help in early diagnosis.
Director of Uni-Health Verona du Perez pleaded for support for patients with MG, saying, “We can’t isolate people; we shouldn’t label people; one thing that we need to do is to assist them in the path of their health”.
Ockhuizen further said they will have support groups for patients with MG, giving them the feeling that they belong and a message of hope and love.
In the long run, the foundation would like to help patients who cannot afford medical aid, as well as to help with treatment funding; however, this is a long-term goal.
“We are relying on sponsors at the moment, individual and corporate. Now we’re working on building relationships, and getting to be known in the community, and we welcome, donations, sponsors volunteers and advocates. We also plan to collaborate with local businesses next year to fundraise,” she noted.
Ockhuizen then expressed her gratitude for those who showed up for the launch, saying “It is just wonderful to know that we have support from other doctors and the community”.
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