‘I was so scared and thought that it was the end of me’ — a woman shares her battle with lupus
For the last decade, Kholofelo Faith Makuwa has learned to live with the debilitating auto-immune disease, lupus. She shares her day-to-day experience with Health-e News.
When Kholofelo Faith Makuwa was first diagnosed with lupus, she scoured the internet trying to understand the autoimmune disease. Learning to live with the autoimmune disease would change any plans she had for the rest of her life.
“I still remember, I was with my mom when a doctor told us that I had lupus and by that time we did not know what lupus was,” she tells Health-e News. “I also remember when the doctor said to me ‘You’re still very young to have this,’ and I was only 17-years old and I was in matric,” says Makuwa.
Now 28, Makuwa has lived with the disease for a decade. Makuwa has lupus erythematosus, the most common form of the disease. Lupus is a systemic autoimmune disease that occurs when the body’s immune system attacks the body’s own tissues and organs. It causes inflammation and tissue damage and can affect many different body systems such as the joints, skin, kidneys, blood cells, brain, heart and lungs.
When she was diagnosed, Makuwa knew little about the disease and how it would affect her. From their home in Sekhukhune in Limpopo, they turned to online searches.
“The very first day we researched about the diseases on the internet I did not even sleep as I was scared and in disbelief about the things we found,” she says. “I was so scared and thought that it was the end of me.”
Living with the symptoms
Makuwa has learned to live with the disease, but says its symptoms can be debilitating, affecting her daily life.
“Living with lupus is like living with a constant pain that you wish you can make it disappear,” she says. “I am forever in constant pain, suffering fatigue and most of the times I do not even feel like getting out of bed or doing anything.”
Lupus symptoms vary from person to person. The most common indicators include fever, joint ache, severe fatigue, skin rashes, hair loss, and even seizures.
“The most painful thing about lupus are the mouth sores that usually occurs in summer and joint pains that usually happens during rainy seasons and winter,” she says. “The disease has also affected my skin as I am too sensitive to the sun and it is difficult to drive or walk outside to enjoy the sun like others.”
There are five types of lupus, each with their own effects on the body. Along with lupus erythematosus, there is also discoid lupus and cutaneous lupus affect the skin. Neonatal lupus is a rare congenital form. Drug-induced lupus is triggered by medication, triggering the autoimmune disease in people who are susceptible to lupus.
Difficult diagnosis, and no known cure
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments, according to the Mayo Clinic. The most distinctive sign is a facial rash that resembles the wings of a butterfly across the cheeks. Still, the clinic says no two cases of lupus are exactly alike.
Makuwa’s early symptoms included blood clots on her legs and pain all over her body, including severe headaches. At one point, she could not walk at all.
“In my case we do not know what triggered my own immune system to attack my body,” says Makuwa.
With no permanent cure, treatment focuses on treating the symptoms and improving the patient’s quality of life. Makuwa uses plasmoquine, homeopathic medication and steroids. These help to suppress her immune system so that it does not attack healthy tissues. She also uses supplements and other complementary treatments to minimise her flare-ups.
Learning to live with the disease
“It took me a long time to accept the condition but now I have realised that lupus does not define me. I have learned to live with my pain and to enjoy and appreciate each second,” says Makuwa. “I am still learning to eat right, work out and most importantly to learn different ways to calm my mind.”
Makuwa who is unemployed but helps her mom run her businesses from time to time. Her family’s support keeps her going and ensures she never loses hope.
“The support I get from my family and friends is so amazing as sometimes I even feel like they know about the condition more than me,” she says. —Health-e News