Source: The Standard
Published on 26/12/2011
By Wairimu Nyambura
For many African women, especially those brought up in the rural areas, motherhood is a dream that begins in childhood.
Virginia Wangeci and Irene Nge’ndo fell in this category but never carried their dreams to completion because as they were growing up, something went seriously wrong.
My Health caught up with the women at what is referred to as Lupus Foundation forum at Nairobi Hospital where they told their story. Theirs is a tale of hope and a woman’s strength to rise above adversity and customs to live life to the fullest.
The 28-year-old Virginia hails from Nyeri County. She is lively and walks tall with a gracefulness that belies the fact that she is battling lupus.
Lupus is an auto-immune 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.
Although doctors do not know exactly what causes lupus and other auto-immune diseases, most believe that lupus results from genetic and environmental stimuli.
Since lupus is known to occur within families, doctors believe that it is possible to inherit a genetic pre-disposition to lupus. There are no known genes, however, that directly cause the illness. It is probable that having an inherited predisposition for lupus makes the disease more likely only after coming into contact with some environmental trigger.
Sleeping on the back
The higher number of lupus cases in females than in males may indicate that the disease can be triggered by certain hormones. Physicians believe that hormones such as estrogen regulate the progression of the disease because symptoms tend to flare before menstrual periods and/or during pregnancy.
Anyway, back to the hospital where Virginia and others were gathered for the monthly meeting to share experiences and support one another as they battle the disease. It was all smiles and claps when Virginia walked into the meeting, carrying her six-month-old baby girl; she was the ray of sunshine on the chilly Monday morning.
In 2004, Virginia was diagnosed with lupus and for a month she was confined at the Nyeri Outspan Hospital with doctors unable to pinpoint her condition until she made a visit to a specialist in Nairobi.
Her life would take a dramatic turn; this strange disease would lead to stigma and the loss of a relationship for the then 21-year-old.
“I had never heard of lupus before. No one in my family has ever had the disease. I was scared and at the time it sounded like a death sentence,” she recalls.
The child had choked in her womb after tying itself with the umbilical cord. During her pregnancy, she had developed odeoma — a condition that caused her feet to swell. In an attempt to relieve her discomfort, she would sleep on her back. This caused the umbilical cord to tie around the baby’s neck.
Her grief would be compounded further after a doctor making rounds at the maternity ward noticed the black spots on her skin and advised her to be checked for lupus.
True enough in June 2009, she was diagnosed with discoid lupus — a condition that affects the skin.
“In 2007, I would make constant visits to different dermatologists in the city in the hope of finding a solution to the black spots on my face but none could explain why I was sick,” she says.
“I felt mixed emotions after my diagnosis. Would I live and if so, for how long? Nothing prepares you for such moments,” she adds.
Misdiagnosis is common for patients with lupus. It’s non-specific symptoms makes it possible to camouflage as joint problems, malaria, fever, weight loss or generalised weakness, says Dr Philip Simani, physician and rheumatologist consultant.
Periods of flare
The disease is not viewed as a national priority compared to HIV and Aids, malaria or nutritional illnesses, hence little or no investment is put towards creating awareness, says Dr Simani.
There are several type of lupus, systemic lupus erythematosus (SLE,) discoid (coetaneous), drug-induced, and neo-natal.
SLE is the most common and severe type of lupus. It can affect any part of the body’s tissue. People with SLE have inflammation, problems with skin and joints, while others will have joints, lungs, kidneys, blood, and/or the heart affected.
This type of lupus is also often characterised by periods of flare (when the disease is active) and periods of remission (when the disease is dormant). Discoid lupus affects the skin, usually a rash appears on the face, neck and scalp, and it does not affect internal organs. Lupus patients can also suffer from seizures, headaches and various psychiatric manifestations like depression.