In the bustling heart of Accra, a woman once stood tall on the tracks of the El-Wak Stadium, sprinting toward medals and glory.
Today, she stands as a voice of survival—battling an invisible illness that has tested her body, mind and spirit.
Sweetness, as people affectionately call her, is not just a lupus warrior but a beacon of hope, a patient advocate and a living testimony that purpose can be found even in pain.
Her life once moved at the speed of a sprint. A gifted athlete at Achimota School, she won silver in the 800-meter race and represented her house with pride.
Later at the University of Ghana, she balanced her studies in Crop Science with her passion for sports, competing for Mensah Sarbah Hall. But beneath her physical prowess, something threatening was lurking.
During her third year at the university, fatigue began to interfere with her vibrant life. Despite being a top-performing student, she found herself unable to stay awake during lectures.
One day, she missed an exam—not out of unpreparedness, but because she misread the time, a sign of cognitive fog she would only understand much later.
The disease was already weaving itself into her life.
Silent intruder
Systemic Lupus Erythematosus (SLE), or simply lupus, is a chronic autoimmune disease that occurs when the body’s immune system, meant to protect against infection, mistakenly attacks its own tissues.
There are various types of autoimmune diseases such as Rheumatoid Arthritis, Type 1 Diabetes and Multiple Sclerosis, each with specific body organs and tissues that they attack.
Lupus, however, is predominantly seen attaching various organs, including the skin, joints, kidneys, and heart.
For lupus, no two cases are alike, and symptoms may come and go, often making diagnosis a long and painful journey.
On average, it can take six years or more to receive an accurate diagnosis.
Most people with lupus experience periodic flares—episodes where symptoms worsen—and periods of remission, where they may feel relatively well.
Women make up 90 per cent of lupus cases, especially within their reproductive years of 15 to 44.
Sadly, women of African descent like Sweetness are disproportionately affected and are at higher risk of severe organ damage.
Lupus cannot be caught from someone else, nor can it be prevented.
Its causes remain unknown, but it is known to run in families and may be triggered by hormonal changes, infections, stress or exposure to extreme weather.
For Sweetness, the turning point came after a trip aboard a Ghana Navy ship, where prolonged exposure to cold triggered new symptoms—painful joints, fatigue and dizziness.
Misdiagnosed for years, it wasn’t until 2008, after a conversation with a doctor, that lupus was suspected. A formal diagnosis came in 2015.
By then, lupus had ravaged her body. She experienced hair loss, dramatic weight changes and sores on her face. At her worst, she was wheelchair-bound.
“I’ve had days when my legs just gave out from under me,” she said. Yet even in that state, her determination never wavered.
While pursuing her master’s degree in Communication Studies at the University of Ghana, Sweetness faced near-impossible odds.
She discharged herself from the hospital just to write her final exam.
Cost of survival
In Ghana, a lupus patient in remission may spend around GH¢500 each month on medications alone.
For those experiencing active flares, that figure can rise to over GH¢6,000—excluding the cost of lab tests, consultations, nutrition and basic living expenses.
This heavy burden often forces patients to choose between life-saving treatment and everyday necessities.
Mental, social impact
Lupus doesn’t just scar the body—it burdens the mind and soul. Many patients face stigma, isolation, panic attacks, depression and even suicidal thoughts.
For some women, lupus first appears during or after pregnancy, and it places every expectant mother with lupus into a high-risk category.
The condition can also derail careers, upend families and rob nations of a healthy, productive workforce.
Sweetness, now a patient advocate, is raising her voice to ensure no one suffers in silence.
“I’ve stood at the crossroads of life and death many times, but by the mercies of God, I’m still here—to testify, to educate and to inspire,” she said.
Making lupus priority
Despite affecting millions globally, lupus remains underdiagnosed, misunderstood and underfunded.
In Ghana, it is time to bring autoimmunity onto the national health agenda.
Sweetness has added her voice to the call to prioritise lupus as a public health concern.
“We need early diagnosis, affordable treatment and national education campaigns.
Our country cannot afford to lose its people to a disease we can manage with the right support systems,” she says.
Living each day with lupus is like navigating a minefield—pain may erupt at any moment.
But with the right care, lifestyle adjustments and community awareness, patients can live fulfilling lives. Sweetness is proof of that.
As she puts it, “Awareness, advocacy and education aren’t just words—they’re survival tools.
And with your support, we can change the story of lupus in Ghana.”
This month is World Lupus Awareness Month, a time dedicated to shedding light on the struggles faced by lupus warriors like Sweetness.
Let us support the global agenda to raise awareness, amplify patient voice and advocate for improved care and resources.
Together, we can turn silence into solidarity and create a world where no one battles lupus alone.
