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Hospitals have become familiar places- Beatrice shares her experience after being diagnosed with lupus

 Beatrice Awange in her office at ITEC Engineering in Yaya Centre, Nairobi. Photo: Jenipher Wachie/ Standard

The only time other time I had ever been hospitalised in my life was when I gave birth to my two children through caesarian sections. But since five years ago, hospitals have become familiar places.

In December 2011, sudden pains assailed my joints. They hurt so much that I wasn't able to make merry with my family members on Christmas day. My mum saw how much pain I was in and recommended that I see an orthopedist. He carried out some tests. They all came out negative for arthritis and recommended a steroid medication meant for aches.

The medication worked for a while but the pain came back with a vengeance two weeks later. I became so weak because every part of my frame was in pain. Eating, walking and going about my usual routine made me ache all over. In 2012, I was rushed to the private wing of Kenyatta National Hospital (KNH) where I was admitted and immediately started undergoing another round of tests.

When the tests turned out negative, the physician recommended a rheumatologist. He carried out an Antinuclear Antibody (ANA) test. I tested positive for lupus, a lifelong condition that affects connective tissue. The only time I had ever heard of lupus is when media personality Lorna Irungu was diagnosed with the disease.

By the time I was leaving the hospital, the bill was over Sh200, 000. However, I was relieved because I now knew what was ailing me.

The last five years have been tough. Medication has become a part of my life. When I was diagnosed in 2012, I would take 46 tablets a day. I had even become anaemic because I had a bleeding ulcer, which thankfully was discovered early enough through an endoscopy.

I have had moments of respite and flare ups. In February 2016, I suddenly began vomiting and developed stomach aches. I thought I had food poisoning. I called my physician. He instructed me to go to a hospital. They carried out some tests my doctor had ordered to be done. He then informed me that I had experienced a heart attack! I was shocked because I had walked into the hospital. I ended up being admitted into the High Dependency Unit (HDU) for over a week.

Another flare-up erupted was in June. I had pneumonia. Antibiotics were administered and after a week I was discharged. But when I got to the gate to my home, I collapsed! The next day I was admitted in hospital again.

The doctor ordered some scans and we learned that the fall had ruptured my spleen. It had to be surgically removed! The operation was not immediately done since I was on blood-thinning medication.

After being intravenously fed for five days, the splenectomy was carried out. My spleen, it turns out, had collected over two litres of blood from the abdominal sac. I had to go undergo another transfusion.

My family, friends and colleagues from work have been my rock through it all. I have become a member of The Lupus Foundation of Kenya and a 114-member conquer lupus whatsapp group that discusses topics related to the disease.

I'm glad that of my close relations; six sisters, mother and children, no one else has been assailed by such an ailment. Although I'll live with it forever, I have learnt to cope by having an open mind, eating well, exercising and to religiously taking my medications.

Facts about lupus

Lupus is autoimmune disease where the immune system treats the body's own tissue as a foreign substance and produces antibodies to fight it.

The damage caused by these antibodies may produce symptoms such as:

• Rashes,

• Headaches,

• Fatigue,

• Arthritic joint disease,

• Heart damage,

• Shortness of breath

• Impaired kidney function

The disease follows an irregular course of remissions and flare-ups.

The exact cause or trigger for lupus remains unknown. Research has shown that the disease results when a specific set of susceptible genes is exposed to a combination of environmental factors such as infectious agents, certain drugs, excessive ultraviolet light, physical trauma, or emotional stress.

Dr. Simani, a rheumatologist reveals that diagnosing lupus is difficult: "The tests required for confirmation are relatively expensive. Secondly, lupus can manifest itself in a very innocuous way. A doctor in say, Migori or Western Kenya, might treat one for malaria. To avoid this, we have been training clinical officers and nurses on how to diagnose lupus in the counties."

Currently, there are no statistics on how many Kenyans are living with the condition. What is known is that lupus strikes women 10 to 15 times more than men. "The disease is most common in women who are in their child-bearing age but it can also occur in men. It often develops between the ages of 18 and 40. This tells us that there must be hormonal contribution because cases below or above these ages are rare."

"The oldest person I have ever treated was a 65-year-old woman while the youngest was a foetus. The boy is now on medication. He'll live a full life because the condition was detected early."

Treatment for lupus requires a balance of medication and the control of environmental factors. A patient with lupus should avoid sunlight, eat a healthy diet, exercise and minimize stress.

 

 

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