The Oyemam Autoimmune Foundation has appealed to the Ministry of Health, Ghana Health Service, policymakers, and other relevant stakeholders to come to the aid of lupus patients in Ghana by making access to treatment visible and clear to lessen the burden of care and treatment on them.
The foundation said public education to create high awareness and access to well-equipped lupus clinics can significantly help reduced diagnosis time and treatment.
Lupus is a chronic autoimmune disease which causes a person’s immune system to fight his or her own healthy tissues and organs. It has no cure and patients must be on medications to keep it controlled. Some lupus symptoms include joint stiffness, skin rashes, blood clots, fatigue, mood swings, memory loss, organ damage, hair loss and headaches. About 90 percent of people who suffer from lupus are women aged between 15 – 44 years. Somehow, lupus is more common in black women who tend to suffer more severe symptoms.
In a statement to mark World Lupus Day which was observed this May, Mrs. Emma Danso, Executive Director of Oyemam Autoimmune Foundation, said lupus is common in Ghana but due to low awareness and misconceptions about the disease, it is usually thought to be something else. This often leads to some patients suffering for long periods before getting a diagnosis; misdiagnosis and wrong treatment; stigmatization; loss of employment, among others.
“The notion that lupus is a foreign disease is only a myth”, Mrs. Danso said adding that every week, new Ghanaian patients are diagnosed of lupus in the country.”
She said, most of these patients are women within their childbearing years who are serving Ghana productively in different fields of endeavour but because lupus is an unpredictable cruel autoimmune disease, it interferes and alters their lives.
Mrs Danso indicated that lupus is an important public health issue because it greatly impacts maternal health and causes fatalities especially in undiagnosed women. She cited an example that undiagnosed women who should be receiving special attention during their pre-natal period are often missed and later suffer from pregnancy complications which sometimes result in loss of lives.
“The extent to which lupus impacts a person’s life greatly depends on early and accurate diagnosis, effective treatment, appropriate lifestyle adjustments and support,” says Mrs. Emma Danso, who is also a patient advocate.
It is estimated that each month, a lupus patient whose disease activity is relatively well controlled spends at least 500 Ghana Cedis on medications alone. For a patient with active disease activity, monthly medication expenses can be as high as 6,000 Ghana Cedis, excluding consultation fees, cost of laboratory tests, nutritional needs as well as utilities which make life difficult for lupus patients.
“It is a terrible state to be in when a patient has to choose between medications and other essential needs to live normally like everyone else. Coupled with all the other complexities of lupus, many patients tend to suffer from anxiety, panic attacks, depression and other mental health challenges”, lamented Mrs. Danso, “Currently, I spend about 1,500 Ghana Cedis monthly on my medications whereas in the past I was spending 6,000 Ghana Cedis.
“We are pleading with the National Health Insurance Scheme to cover lupus medications to ease the burden of patients and their families.” the Autoimmune Foundation Director said.
Mrs. Danso also requested government to establish a national autoimmune commission to address all autoimmune related issues in the nation, explaining that though there are many autoimmune diseases, lupus is a prototype and can cause patients to suffer from other types.
“I have suffered from multiple autoimmune diseases because of lupus”, she disclosed, “Likewise, there are many untold stories of lupus patients across our nation.”
She expressed gratitude to all those who are helping in diverse ways to make lupus visible in Ghana and asked for continued support to inspire hope to live on.