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It is the disease commonly mistaken for Aids, Tuberculosis, Pneumonia among other diseases. Without knowing it, doctors treat the symptoms rather than the disease itself — lupus. It has affected more people than we could ever imagine, writes NJOKI CHEGE

Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue.

This results in symptoms such as inflammation, swelling and damage to joints, skin, kidneys, blood, the heart, and lungs.

Some of the members of Lupus Foundation of Kenya. [PHOTOS: MAXWELL AGWANDA/ STANDARD]

For a disease that requires a doctor with an eye for it, many patients suffer for years without really knowing why.

With slightly more than 200,000 people suffering from this disease in Kenya, it is no wonder it is the last thing in a doctor’s mind when a patient presents the symptoms.

However, there could be more people suffering from lupus without knowing it, hence the need to create awareness.

Eve Woman talked to a few survivors who recounted their experiences and journey with lupus. Some have made it their purpose in life to create awareness on the disease.

 

Getrude Sakwa Osore

"For a long time I didn’t know what was eating me.

In 2007, I attended a para-military course at the Administration Police Training College and my condition went downhill. After the training, I underwent a laparoscopy surgery for endometriosis, after which I did an anti-nuclear antibodies (ANA) test. By now, I was showing all the signs of lupus; joint pains, mood swings and severe fevers. My doctor explained that I was suffering from lupus; something which I had never heard of before. He told me that lupus is an autoimmune disorder that had no cure.

I have come to terms with the disease, taking it one day at a time. My family, particularly my husband, has been very supportive. Lupus is an expensive disease and the medicines, which are imported, are costly but he has been with me through the journey. I also have a close-knit family of friends and relatives. They have always been there for me and contribute towards my medical bills.

People ought to know that lupus is a complicated disease and patients need love, care and support. It is often mistaken for Aids; I had to deal with rumours that I was either HIV positive or bewitched."

Kitonyi Saiti

"I thank God for my early diagnosis! I was in perfect health until July 5 last year when I was diagnosed with lupus. Prior to my diagnosis, I was feeling fatigued and I had a serious fever. The doctor I visited thought I was overworking myself and told me to take a rest. So I took a trip to Mombasa.

While in Mombasa, I developed a boil on my neck and sores on the head. I saw another doctor who put me on antibiotics.

The boils came back in full force, this time on my nose, eyebrows, inside my nails and even in my mouth. I soon developed black patches on my hands, which would get darker every week, making it hard for me to use my hands to do anything.

I went to see my doctor again and told her about my darkening hands. She took time to listen and inquired about the other problems I had. I thank God I was diagnosed earlier because now I can manage the disease.

I have since changed my diet. I keep off sugars, excessive salt and wheat products. I take vegetables and an egg for breakfast; I keep off fruit juices of all kinds. Sugars are a no go zone because they are inflammatory, making the lupus worse.

I do experience flare-ups; the last one being in January, when I felt exhausted, paralysed, and all my energy sapped from me. However, through God’s grace, I survived it and now I am much better.