Using my pain to heal others: My battle with lupus : Evewoman - The Standard

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Using my pain to heal others: My battle with lupus

Wanja Kamau

After being diagnosed with a disease she had never heard of before, Wanja Kamau almost sunk into depression. Now she takes it day by day, using her pain to heal others.

Growing up, I was a normal healthy child full of life and very playful. I had never been to hospital for any serious medical issue until 2010 when all that changed. It began with sore throats and then some mild joint points all over my body and the doctors said I had recurring malaria. Others said I had depression or chronic fatigue. I was in and out of hospital for a couple of months getting treated for the wrong diseases.

I was misdiagnosed for at least six months. Later in the year, the pain became chronic and all my fingers were in pain. I could hardly do anything.

My body also became stiff. When I was rushed to Nairobi Hospital for a checkup, the doctors carried out intensive medical examinations and I was diagnosed with SLE/Lupus, a disease I had never heard of before. That evening, when I met the hospital's chief rheumatologist, he explained to me all about the disease and gave me a book to help me understand the condition.

I quickly learnt that lupus has no cure, only management options. Lupus is a chronic autoimmune disease in which the body's immune system becomes hyperactive and attacks normal healthy tissue. Sadly, it mostly affects women between the ages of 15-45 years and if not well managed, can lead to death due to lupus-related complications.
I could not comprehend how my immune system was attacking itself having not had any medical complications before.
I almost felt as though my life and ambitions had suddenly been cut short. With a disease that has sudden flare ups and needs weekly medical checkups, you really need psychological support from other people living with SLE/Lupus who have managed to battle the condition.

The medication is also very pricey. I spend approximately Sh 1000 to Sh 2000 a day depending on the severity of the condition at the time. Currently, I am on five different drugs and supplements daily.

I had to change a few things about my lifestyle and got a diet plan from my doctor which eliminated grains, fried foods, cow milk and red meat. I also have to avoid exposure from the sun and I am always required to use sunscreen. When the cold season hits, I have to wear gloves and socks. This is because weather extremes can trigger flare ups.
Five years after my diagnosis, I found a group of people, now friends, going through the same condition and we formed the Fight Lupus Kenya Initiative. Our main objective is to create awareness in order to increase early detection in the hope of saving lives and helping the victims live full and active lives.

The initiative now has about 100 lupus victims and supporters. We currently rely on well-wishers to support our most vulnerable members.
It's tough living with a condition that nobody even talks about. Sometimes when I go to a hospital because I have the flu, the doctor tests for HIV/Aids when I tell him that I have Lupus.

Only a few can understand the constant chronic fatigue that drains you, the shortness of breath, kidney and heart complications that many lupus sufferers go through. It's a daily struggle.

SLE (Systemic lupus erythematosus) is the most common type of lupus. Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs.
Common symptoms include
• Fatigue
• Fever
• Joint pain,
• Stiffness and swelling,
• Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
• Skin lesions that appear or worsen with sun exposure (photo sensitivity)
• Fingers and toes that turn white or blue when exposed to cold or during stressful periods
• Shortness of breath
• Chest pain,
• Dry eyes,
• Headaches,
• Confusion
• Memory loss.

The exact cause of SLE isn't known but several factors have been associated with the disease. These include:
• Genetics
• Environment
• Sex - SLE affects more women than men and it sets in later for the men
• Hormones

No cure for SLE exists. The goal of treatment is to ease symptoms. Treatment can vary depending on how severe the symptoms are and which parts of the body SLE affects. They may include

Anti-inflammatory medications for joint pain and stiffness
Steroid creams for rashes
Corticosteroids to minimise the immune response
Antimalarial drugs for skin and joint problems
Disease modifying drugs
Targeted immune system agents for more severe cases.

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