My battle with lupus

Georgina Wambui has wrestled with lupus for over four decades. After many years of distress, pain and desperation, the illness was only diagnosed in 2009. She shares her story with LUCY MARONCHA

I can only describe living with lupus as horrendous. I deal with severe pain, acute fatigue, memory lapses and sometimes temporal muscle paralysis. Lupus imitates a myriad of sicknesses hence before it was diagnosed; my family and I had spent a fortune treating the wrong diseases.

My hilly road started as I was growing up in Molo, a town in Nakuru County 48 years ago. My parents were peasant farmers and I would often join them in tilling the farm so when I started experiencing numbness on my fingers and toes, we all thought it was due to working in the farm and the typical Molo cold weather. None of us would ever have thought that this numbness would result to endless hospital admissions and long journeys to and from local and international hospices.

When I later joined a boarding school, I realised that whenever I was doing my laundry, my fingers would get too numb to even squeeze out the water from the wet clothes. Blaming the numbness on the cold weather, my elder brother bought me a water-heater to warm the water whenever I needed to do my laundry. Regardless, my fingers however continued weakening and I could not as much as press the pegs to hang clothes. I ignored the condition hoping that it was seasonal and vanish on its own. I lived with the recurrent bouts until I started my teaching career.

I then met the love of my life and got married. When I got my first child in 1997, like is common with all chronic illnesses, my immunity was heavily compromised and I got very sick. So much many people thought I would not survive.

The Downward Spiral

My first severe sickness was bouts of malaria which drove me in and out of hospitals. At some point my body got so swollen that I could barely fit in my clothes. All tests turned negative and though I was not in any pain, I was always fatigued and sleepy. I don't know what I would have done without my supportive family and my ever-understanding employer; the Teachers Service Commission. I developed foot-drop( a gait abnormality) and my entire right-hand side became completely numb.

 I underwent intensive nerve physiotherapy at different hospitals in Nairobi and took numerous and very expensive laboratory tests. Every time a test was requested, our faces would beam up with hope that would diminish as soon as the doctor would come with the negative results. My husband never left my side and he kept reassuring me that we would fight together. It was after a battery of specialists addressed my case that they diagnosed it as lupus.

We didn't know what lupus was but the diagnosis was the greatest news we had heard in a while. At least we had something to work with. My elder brother broke the news to me as gently as he could and assured me that the condition was manageable.

Management

My treatment started immediately though there is no specific treatment for lupus. I have a doctor whom I consult but he has to refer me to other specialists as dictated by how the disease manifests.

I remember a time I developed a small pimple which grew into a big wound in a short time. Medicals practitioners at a local health centre where I sought treatment were sure I had syphilis until when my doctor came in and explained how lupus mutates.

Since then, I strictly consult specialists and carry a medical report from my doctor. I have been to India twice for nerve and other lupus-related evaluations. Most Insurance companies don't cover lupus so in case of treatment my family and I are obligated to fundraise. I cannot estimate how much money I use on my health per month because I can get several illnesses in a month requiring a specialist.

My journey is not easy; one day I can be bubbling in health, the next day I could be bedridden in hospital. Those who cannot comprehend lupus may think I am making it up to abdicate my responsibilities. I now teach at the Kiambu Institute of Science and Technology (KIST) and I have a clear understanding with my colleagues and students. Sometimes I can forget what I was saying in the middle of a lesson.

It is easier for me now, unlike earlier in my career, when I taught in high school where I would stand and write a lot. But I would appreciate if I would work in an environment that doesn't require writing and marking. That's why I took a diploma in Human Resource management with hopes that one day I can work in an office.

The Intricacies Of Lupus

Lupus is a non-acquired chronic condition that may affect different parts of the body, including the heart, joints, kidneys, blood and even the skin. This according to experts; makes it very difficult for doctors to diagnose the condition. Lupus, according to Dr Philip Simani a Nairobi-based rheumatologist, is a condition very common to women of child-bearing age but can occasionally affect other ages.

Dr Simani says that the cause of lupus is not exactly known but explains that it has a strong genetic background. Nonetheless, the doctor states that lupus can be triggered by an individual's environment, being exposed to a lot of sun or stress among other triggers. Dr Simani elaborates that lupus occurs when the body's natural defence system is highly aggressive and attacks healthy tissues instead of fighting bacteria and viruses.

A person with lupus has symptoms such as fatigue, joint pains and numbness. Children can develop skin rashes as a primary symptom. "Unfortunately, unless confirmed by a specialist such as a rheumatologist, doctors can continue to treat the wrong disease for a very long time," he notes. Dr Simani advises that should a woman have miscarriages in the first three pregnancies, it's important they seek a rheumatologist's advice to rule out lupus since that is also a common symptom.

A lupus patient is attended to by a group of specialists because it keeps mutating. There is consequently, no particular treatment for lupus but a patient is put on a variety of medication including immune modulating drugs and anti-inflammatory treatment. This helps modulate the immune system of the patient.

One of the most common side effects of this treatment according to Dr Simani is a herpes infection.