My name is Gio’vanna Thompson and in 2005 my life changed forever, when my mother Audrey was diagnosed with SLE Lupus. She’d been ill for months always tired, aching, losing weight.
Then one night she collapsed on the stairs and was rushed into hospital.
It was the scariest time in my family’s life. We had no idea what Lupus was or the impact it would have on my mothers health. We only knew my larger-than-life Mum was lying in a hospital bed, in pain, desperately ill, her immune system under attack. She was just 39 years old. I was 10.
Now 56, my Mum recalls those first few weeks in hospital.
So what is Lupus ?
Lupus is a, autoimmune disease that can affect any part of the body causing widespread inflammation and tissue damage in the affected organ.
The most commonly impacted areas are joints, skin, brain, lungs, kidneys and blood vessels. The disease mostly affects women who make up about 9 out of 10 adults with the disease.
It’s also more common in women of Afro-Caribbean, Hispanic, Asian and Native American descent than in Caucasian women.
It took just over a year for the doctors and specialists to stabilise my mother’s lupus. Every time she was allowed home, she would be taken ill again, collapse again and be rushed back into hospital.
The treatments on offer are a choice between Chemotherapy or steroids. She chose steroids, but getting the treatment right took months.
Her system could not cope. She had to give up her beloved job as a cook in a local primary school. She could not face the gym or the hikes she used to enjoy with friends. When she was allowed home, she was bedridden, she could not eat, she lost all her hair.
Back then the disease was not commonly known in the UK but in America doctors had started to see a rise in cases and were treating patients with many different steroids and researching the best ways to help those living with this disease.
When my mother was diagnosed, I was just becoming a teenager and didn’t quite understand what was going on. It was a difficult and scary time and seeing her so ill on a hospital bed unable to do anything for herself broke my heart.
For my brother Rhys, who was 14, and I our daily routine consisted of school, coming home having tea, going to the hospital and sitting with Mum till she fell asleep.
The effects of lupus still remain present. There is no cure for such a rare complex disease that affects many women, especially those of ethnic backgrounds
How does Lupus Affect you ?
The most serious health risks in Lupus patients are cardiovascular disease, Kidney disease and stroke.
People with lupus are specifically at an increased risk for atherosclerosis (the deposition of fats and cholesterol [plaque] along the lining of the arterial wall). In some people, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it.
Endocarditis can damage heart valves, which can results in heart murmurs. When the disease affects the kidneys, it’s called lupus nephritis and patients generally require intensive drug treatment to prevent permanent damage.
Although her medication keeps her lupus in remission, meaning there are long periods of time where the symptoms will fade away, he symptoms can reappear at any time, causing severe pain throughout her entire body and forcing her to become bedridden.
“In order to continue living, my mother has to take 16 tablets daily.”
Lupus is not only a physical pain, it is mental. It causes severe depression which many lupus patients experience, due to the huge life changes they have to adjust to.
Watching your Mum go through this is hard.
One day she is fine. She’s my mum who loves to clean the house keep it immaculate, see our relatives and friends.
Then on another day she’s so tired she’s unable to do anything. My Nana and my Father are always there and as I’ve become older and understood more I help as much as I can.
Hopes for the future
For the last 17 years I’ve grown up witnessing and experiencing the devastating effects Lupus has on those who suffer from it and their families.
The cause of Lupus remains unknown, but there is solid evidence that genetics, epigenetic (changes in chromosomes that affect gene activity), environmental factors, viruses and infections play a role.
My mother and I can only hope the studies carried out by surgeons of these variables are expected to improve our understanding of causes, which should lead to improved diagnosis, prognosis, prevention and treatment.
In the meantime we want general practitioners to become more aware of Lupus, by taking up training and more education, so that they can properly recognise the symptoms and signs before it’s too late.
In the meantime my Mother and I will continue to live with Lupus
