Too much exposure to the sun makes my joints ache

In 2014, Winnie Opondo began experiencing numbness. Sometimes her feet and hands would get so cold and walking became a laborious task. She would check herself into the hospital but she would be diagnosed with various infections. Still, the symptoms persisted. 

“I was treated for bacterial infections for a long time and took different types of antibiotics with no respite,” she says.

She had also had numerous tests including HIV and diabetes and doctors would be puzzled when they all turned out negative. At this point, Winnie was always in pain, so much so that she became obsessed with finding out the cause.

In 2016, she became pregnant and that’s when everything blew up, says the mother of two. “Sometimes I had difficulty in breathing. I worked far from home and I assumed that the long distance was leaving me fatigued. I would drive home and remain in the car for 10 minutes as my feet would be on fire. The chest pains also led to me being hospitalised for pneumonia and hyper-acidity.”

After an uneventful delivery in May 2017, she quickly settled into her new role. And the pains seemed to have abated. But two weeks after giving birth, the pains came back.

“This time, I would feel the pain from my neck going down my spine. It was accompanied by a burning sensation. The chest pains were so intense I couldn’t sleep. I also couldn’t sit upright. I would tell myself that it was just post-delivery effects. Sometimes, I would wake up fine but during the course of the day, I would be in so much pain that I could not move.”

Winnie’s hands would ache so much that she couldn’t pick up the newborn or even breastfeed unassisted. When she went back to the hospital she would be told that it was yet another bacterial infection. This time, she could only crawl. Walking was an impossible task.

After being in distress for months, she decided to seek a different doctor hoping that he would have an answer to her joint pains. The doctor carried out some tests that were analysed in South Africa and that is when they found out that she had systemic lupus erythematosus (SLE) which is an autoimmune disease where the body’s immune system attacks the healthy body tissue in various parts. It is the most common form of lupus.

The doctor referred her to a rheumatologist for specialised treatment.

“I had lupus. I was happy to finally know what I was suffering from. Many people assumed I had been bewitched,” she says.

“I read about the disease online to prepare myself psychologically for the journey ahead. I started my medication with chloroquine which reacted badly with my body and I had to change. I was put on immune suppressants, pain relievers and calcium supplements.”

SLE manifests differently in different people. Winnie’s presents itself as arthritis and since 2018, she has been on daily medication. So far, she has experienced two flare-ups. This is when the disease becomes active and symptoms become more evident.

Despite still being on treatment, she has had to make peace with mild pains and fatigue. Winnie also experiences body rashes, swollen legs, dry and red eyes, hair loss and sporadic fevers as a result of the disease.

“I can live with all that now as I have experienced worse, especially before I knew what was ailing me. My two children are my motivation. I pray to God to allow me to live for them. So I can’t lose hope or give up.”

She has also learnt to manage the triggers to her flare-ups.

“Stress and lots of sun are bad for me. Too much exposure to sun makes my joints ache, so I wear sunscreen every time I go out and cover my face with a big hat. I have to keep away from crowds because I have low immunity. The drugs I take reduce my immune system’s attack on my healthy tissues.”

In her spare time, Winnie, secretary of Lupus Foundation of Africa, creates awareness and motivates those suffering from the disease.

She hopes that the government will one day consider their plight since lupus medication is expensive and diagnosis takes years.

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