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Fighting tooth and nail to see another day…a mother’s struggle with lung lupus

Home National Fighting tooth and nail to see another day…a mother’s struggle with lung lupus
Fighting tooth and nail to see another day…a mother’s struggle with lung lupus

From actively playing volleyball for the country’s national team, being energetic and travelling, Ruusa Kamwi’s world was partially shattered when she was diagnosed with lung lupus, a condition she says became known only after 11 years of ill health.

The 45-year-old artisan and married mother of two boys told this journalist that when she went to play in Malawi in 2009, the coach noticed she was not herself and not performing her best.

“In 2012, I got sick; it was something like strong flu, so I went to the doctor and got treatment for flu – but later on, I started developing rashes. You know when it comes to rashes people always think it is HIV,” she jokingly said.

The reality for Kamwi started kicking in after giving birth to her second son in 2013 when she started having joint problems.

“They were so painful that I needed help with even getting up from the toilet. I got better in 2015, and the following year, it started again. In 2019, I woke up with a swollen face, and I was admitted. I was diagnosed with lung lupus in 2020 after 11 years of sickness,” shared Kamwi.

She said: “When I was first diagnosed, I didn’t worry because I didn’t know what lupus was, so I went home and googled what it was – and even with the explanation, I didn’t understand. And all I remember is asking ‘why me, and why is my body is fighting itself?”

Kamwi was diagnosed by pulmonologist Dr Johannes Willem Bruwer on recommendation by a relative, who noticed similar symptoms in a friend.

Bruwer, who has assisted many Namibians, including the first couple, President Hage Geingob and First Lady Monica Geingos, is known to be the first – and for quite some time, the only pulmonologist in Namibia.

“My lupus is attacking my lungs. When I met Dr Bruwer, he didn’t give medication; all he did was do extensive tests, and he noticed something in my lungs, unlike other practitioners who gave me medicine that didn’t help,” she noted.

Kamwi stated: “The most difficult thing was the inability to cook for my family; imagine, as a mother and a wife, I couldn’t do that – and that’s when I had to come to terms that this is me now”.

She said there is a need to share information about the disease, as many people are not aware of it, and find no reason to hide her lupus because at the end of the day, this is a suicidal disease; there is nothing one can do.

“Many people are suffering. It is not something you brought to yourself or a result of something you did; it’s just your body at play. You have no control over that, so you might as well equip yourself with the much-needed reliable information and make terms with it,” added the soft-spoken Kamwi.

She cautioned the government to intervene and treat lupus like cancer. 

“You get people who have a hip replacement at a young age; I want hospitals to start looking at these symptoms in patients and test them for lupus. I want the government to understand what we are going through,” she pleaded.

Kamwi added: “Some people have auto-immune diseases; some are not curable, but they are manageable, so let’s manage it then. Medical aids are depleted all the time. I can afford my medication; imagine someone out there who cannot. It’s sad and depressing.”

The World Health Rankings show that lung disease is one of the leading causes of death at number eight, surpassing traffic accidents in Namibia.

 According to the latest WHO data, published in 2020, lung disease deaths in Namibia reached 461 or 2.72% of total deaths. The age-adjusted death rate is 40.96 per 100 000 population. 

Namibia ranks Namibia #26 in the world. – psiririka@nepc.com.na