Foundation established for rare autoimmune disorder
It took two months to get the correct diagnosis, with four doctors attributing it to an allergy or stress.
Worldwide, around 150 to 200 people in every million are affected by the disease every year. Currently there are 15 Namibians who have been diagnosed with myasthenia gravis (MG).This rare chronic autoimmune neuromuscular disorder causes a weakening of the skeletal muscles which include, amongst others, the muscles involved in eye and eyelid movements, facial expressions, chewing, speaking and swallowing.
Corachia Ockhuizen has now established the Myasthenia Gravis Foundation Namibia in an effort to create much-needed awareness and to offer support and a safe haven to those who, like her, are affected by the disease.
"I know of some patients who had the disease for a year or more and could not get a diagnosis. The more people are aware of it, the better. The foundation is there to make those who live with it feel that they are heard and that they have a voice. We want to support each other and learn from each other," Corachia explains. In the longer term, she hopes to also be able to offer financial support for treatment since it is very expensive.
Corachia's symptoms began with double vision, her speech was slurred and her eyelids began to droop. Her fingers also started to stiffen, especially when she came in contact with hot water. Sometimes she could barely perform any "normal" daily tasks such as holding a bottle or cutting vegetables. In her case, the onset was sudden and she became so tired that she was forced to resign from her job.
Corachia, who was living in Cape Town at the time, decided to return to Namibia for support and daily help.
She finally saw her doctor and also visited a phytotherapist and was encouraged to see a neurologist when her speech started to deteriorate.
Finally, a diagnosis
"I went to four doctors and most attributed it to an allergy or stress. It took two months to get a diagnosis," says Corachia.
Her symptoms worsened to such an extent that she ended up in an accident in Milnerton in Cape Town in April 2016. A trainee doctor mentioned to her that she suspected it was MG and had blood tests done. The following Monday, Corachia saw a neurologist who immediately put her on medication. "It was a huge relief to get the diagnosis. At that time I did not understand what was really happening to me.
"You can struggle to breathe and swallow, which can cause a huge crisis if not treated in time. In my case, I experienced all the symptoms, apart from being able to walk."
Corachia is currently still on medication and is "much stronger than I was", but admits her case was also extremely complicated because most available treatment options did not work for her.
Since October 2016, she has been hospitalised more than 50 times. Corachia ended up in the intensive care unit nine times due to infection, an operation or MG-related complications. Her thymus gland was also removed at the age of 29 in 2017. This gland plays a role because it lets the immune system know when to attack and when not to. Around the age of 12 or 13 it usually stops, but in her case her thymus gland was still active.
"After surgery, many patients go into remission or their symptoms are well managed, but in my case, doctors constantly struggled."
Under control
In 2019, she was finally able to start Rituximab, which destroyed her B cells and kept the disease under control.
"At the very beginning I saw a GP, but it didn't help. I managed my diet, which helped to a certain extent to feel less tired. Were it not for my neurologist, Dr. Percy Tinei Kumire, and the Lady Pohamba Private Hospital, I don't know where I would be today. I am so grateful for a team of excellent doctors - Dr. Willie Bruwer, Dr. Perry Eagles and Dr. Jones - I am very grateful to them."
The hospital was her second home, says Corachia, and the nursing staff became her friends. Her faith, which plays a big role in her life, and a good support system play a huge role in her journey with MG.
“My family was my rock during my struggle. In 2018, I started low-intensity exercises with a biokineticist, which made a huge difference. With MG, rest is essential. If you overexert yourself, you feel weak and tired. Therapy such as keeping a diary or joining a prayer group and talking about how you feel helps a lot. Anxiety is the reality of all the medication, surgeries and hospital visits, so it helps a lot to have the above support."
Information about the foundation is available on the Instagram page MGFNamibia and on the Facebook page Myasthenia Gravis Foundation Namibia. Corachia can be contacted on 081 747 6470 for information about the disease as well as the foundation. – [email protected]