In Covid-19 times, being a lupus patient has difficulties


In 2015, Sally Lizwa slammed the high school door and stepped out, excited to begin her post-secondary school life. She could not wait to check off her to-do list and join campus. The waiting...

In 2015, Sally Lizwa slammed the high school door and stepped out, excited to begin her post-secondary school life. She could not wait to check off her to-do list and join campus.

The waiting in between, however, brought a guest in her body that changed her life to date. It started with a simple rash, which she dismissed. “I had pain in my knuckles and knees and that was when I decided to seek medical help,” says Lizwa.
At the hospital, she was given Diclofenac injections, which just lessened the pain, but the battle for a chronic disease was just starting. Lizwa was misdiagnosed with rheumatoid arthritis.
When she joined campus in 2016, it seemed like she was cured, only for the disease to show up a year later in full swing. In 2017, her face was swollen and her joints painful. “My trips to the hospital bore no fruit as I would get tested and treated for something different every time,” she says.
Last year came with its fair share of troubles. “My acne got worse, I lost so much weight - from 68kg to 44kg, my hair fell off, I had light sensitivity, swollen feet and face, painful and swollen joints, numbness on the tips of my toes and fingers, night shivers, body rash and skin complications, all at once,” Lizwa remembers. And concerns about her weight loss made her constantly test for HIV.
She finally got a proper diagnosis last year May, which coincidentally is the World Lupus Awareness Month. “I got all the antibody tests done and they came positive for Sjogren Syndrome- Systemic Lupus Erythematosus (SLE).”
Lupus is an autoimmune disease in which the body’s immune system attacks its organs. According to the Centres for Disease Control and Prevention, the causes of SLE are unknown, but are believed to be linked to environmental, genetic, and hormonal factors. People with SLE may experience a variety of symptoms that include fatigue, skin rashes, fevers, and pain or swelling in the joints, says CDC.
Kanja Mwingirwa, like Lizwa, also has the SLE type of Lupus, which is the most common. She uses most of her time on social media to enlighten people on the disease.
Dr Etau Ekwom, a rheumatologist says, there is no cure for lupus as in any autoimmune disease, but there is treatment.
However, the Covid-19 pandemic has complicated the lives of lupus patients. There has been a shortage of one of the main drugs used by lupus patients - hydroxychloroquine. “The advantage for patients on this drug is that they have a mortality difference, which implies that they have a chance to a longer life. It also reduces the risk of sensitivity, flares, rashes, reaction to the sun and a low platelets disorder called thrombocytopenia,” says Dr Ekwom.
The shortage was triggered by an announcement that hydroxychloroquine can be used to treat Covid-19, leading to hoarding of the drug and pushing up its price. A notion that was later ruled out but its effect still took a toll on lupus patients.
“A 200mg tablet that used to go for Sh20 is now about Sh200 and to get one, you had to have a prescription from your doctor,” says Mwingirwa. “The ripple effect was that people rushed to buy the drug. In Meru, for instance, there was no chemist that had the hydroxychloroquine.”
She says due to the shortage she went without medicine for a week. “I just could not get out of bed. When my cousin, a nurse, brought me the drugs, I had to skip medication on some days, so that I can save the tablets,” she says.
Dr Etau affirms that lupus is a rare disease, therefore, not easy to diagnose. That explains why Lizwa’s diagnosis was confirmed last year after having the disease for about three years. However, two more drugs, Belimumab and Anifrolumab were approved to treat lupus.