The Oyemam Autoimmune Foundation has appealed to the Ministry of Health and policymakers to come to the aid of lupus patients in Ghana.
The Foundation said this they could do by making access to treatment visible and clear to lessen the burden of care and treatment on them.
A statement issued in Accra by Mrs. Emma Danso, Executive Director of the Foundation, said public education to create high awareness and access to well-equipped lupus clinics could significantly help reduce 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.
Ninety per cent 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.
The statement said lupus was common in Ghana but due to low awareness and misconceptions about the disease, it was 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 statement said.
It said the notion that lupus is a foreign disease is only a myth and that every week, new Ghanaian patients were diagnosed of lupus in Accra.
It said, most of these patients were women within their childbearing years, who were serving Ghana productively in different fields of endeavour but because lupus was an unpredictable ‘cruel’ autoimmune disease, “it interferes and alters their lives”.
The statement said lupus was an important public health issue because it “greatly impacts maternal health and causes fatalities especially in undiagnosed women”.
It gave an example that undiagnosed women who should be receiving special attention during their pre-natal period were often missed and later suffered from pregnancy complications which sometimes resulted 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,” it said.
The statement emphasized that high awareness, and access to well-equipped lupus clinics could significantly help reduced diagnosis time and treatment.
It, therefore, called on the Ministry of Health, Ghana Health Service, policymakers, and other relevant stakeholders to come to the aid of lupus patients in Ghana to lessen the burden of the disease on them.
It is estimated that each month, a lupus patient whose disease activity is relatively well controlled spends at least GHs500.00 on medications alone.
“For a patient with active disease activity, monthly medication expenses can be as high as GHS6,000.00, excluding consultation fees, cost of laboratory tests, nutritional needs as well as utilities which make life difficult for lupus patients,” it added.
The statement said it was a terrible state to be in when a patient had to choose between medications and other essential needs to live normally like everyone else.
It pleaded with managers of the National Health Insurance Scheme to cover lupus medications to ease the burden of patients and their families.
It also requested government to establish a National Autoimmune Commission to address all autoimmune related issues in the nation, explaining that though there were many autoimmune diseases, lupus was a prototype and could cause patients to suffer from other types.
It expressed gratitude to all those who were helping in diverse ways to make lupus visible in Ghana.