‘My life with myasthenia gravis’

“I’ve spent the last seven years fighting for my life and trying to find myself again.”

These are the words of Corachia Ockhuizen (36) from Swakopmund about life after being diagnosed with myasthenia gravis (MG) in April 2016.

MG is a chronic autoimmune neuromuscular disease which causes weakness of the skeletal muscles.

Ockhuizen says she spent four years after being diagnosed in and out of hospital.

“I was also admitted to the intensive care unit more than nine times due to infections, surgery and MG crises. This happens when one can’t swallow or breathe, involving that one has to be tube-fed through one’s nose,” she says.

It took two months and four doctors to make the diagnosis, Ockhuizen says.

“It was a very rough and scary experience, and since there is no cure yet, I have been given treatment for other illnesses,” she says.

One of Ockhuizen’s main challenges after being diagnosed was fatigue, she says.

“I could barely hold a bottle of water, cook, do my hair, or do house chores. However, I am a lot stronger now,” she says.

She says her condition started improving in 2019, and she managed to get the condition under control in 2020, although she started experiencing some side effects.

She commends her doctors for not giving up on her, as well as the hospital staff where she has been admitted.

“The hospital was like my second home, and God has a reason for brining people into our lives. I will always be grateful for those who were part of my journey,” she says.

FOUNDATION

Ockhuizen is the founder of the newly launched Myasthenia Gravis Foundation Namibia, which aims to save lives as early diagnosis and treatement are crucial in avoiding MG crises.

“Our long-term goal is to assist those who cannot afford medical aid financially where we can,” she says.

The aim of the foundation is to promote awareness, education and support, Ockhuizen says.

“We are spreading awareness and helping people and affected families get the right information and help for MG,” she says.

She describes the launch of the foundation as a success, and says three members shared their experience with MG at the event.

Ockhuizen is calling on corporates and volunteers for their support.

Ockhuizen’s mother, Helen, says her daughter’s journey towards being diagnosed was “terrible and hectic”.

“We didn’t know what was happening. It was getting worse every day when she got weaker, however, I kept praying, adhering to the doctors’ prescriptions for her, and believing in God,” she says.

“My daughter’s recovery is a miracle from God after the open-heart surgery she underwent and the diagnosis of MG and MG crises, which are two different conditions.”

Ockhuizen’s cousin, Anchen Anorieta, says her cousin kept her faith and a positive attitude throughout.

“There was a time when she was in and out of the hospital, and this took a toll on her and her parents,” she says.

MG has taken Ockhuizen from being a career woman to being dependent, Anorieta says.

“I commend her doctor, Percy Kumire, who was a great support to her and our family,” she says.

Ockhuizen’s friend, Colleen Innes, who has known Ockhuizen for the past 12 years, says she was a vibrant and outgoing person before the illness.

“She is still a light to be around. I can recall the day I visited her when she was admitted at the hospital and she was the one encouraging us, instead of us encouraging her. She is so positive to be around, and she indeed persevered,” she says.