Mrs Danso educating nurses on Lupus disease
“If we are able to get the right diagnosis of SLE or lupus, patients can get better care,” says Dr Ahmed Habib, Medical Superintendent of the Hohoe Government Hospital.
World Lupus Day 2022, themed ‘Make Lupus Visible’, is being marked in Ghana and around the world to highlight the impact of lupus on the body’s organs.
Research in Ghana indicates that delay in diagnosis of lupus leads to prolonged suffering from inflammation, which can result in organ damage. There are many diagnosed as well as undiagnosed people suffering from lupus in Ghana.
The World Lupus Federation global survey 2022 indicates that 87% of people living with lupus have experienced at least one organ affected by the disease.
According to the survey, majority of reported patients have multiple organs impacted by lupus with an average of three organs affected. The most common organs were; skin (60%) and bones (45%).
Other top impacted organs and organ systems include; kidneys (36%), GI/Digestive System (34%), eyes (31%) and Central Nervous System (26%).
According to Dr Habib, lupus is an autoimmune disease that many doctors are unable to pick if they do not increase their index of suspicion for such conditions.
He affirmed that lupus awareness is important because sometimes patients are misdiagnosed and given other treatments.
He said, “If awareness is given to health workers, then many cases of sufferers of this condition can now be diagnosed and treatment can be given to them.”
Though there is no known cause, it is believed that exposure to certain environmental conditions, infections, certain medications and genes as well as hormones contribute to triggering lupus in people.
“It is crucial to make lupus visible because even the ‘normal or healthy’ person cannot tell whether he/she is susceptible to the cruel and complicated disease called lupus”, says Mrs Emma Wilhelmina Halm Danso, Executive Director of Oyemam Autoimmune Foundation.
“Lupus is that seemingly harmless butterfly that flies in and acts as a vicious and menacing wolf,” she added.
Some symptoms that lupus patients present include butterfly rash, oral or nasal ulcers, arthritis, serositis, as well as other disorders involving heart, kidney, lungs, nervous system, skin, etc. Lupus is primarily diagnosed by a Rheumatologist, who uses different criteria, such as the American College of Rheumatology (ACR) criteria and Systemic Lupus International Collaborating Clinics (SLICC) criteria for diagnosis.
Many lupus patients may have positive antinuclear antibody (ANA), positive anti-dsDNA, etc, from their laboratory tests.
About 90 percent of lupus patients are women. Most of these patients are within child-bearing age of between 14 to 44 years.
Each year, Mother’s Day and Lupus Day are closely celebrated together in May, which is also Lupus Awareness Month.
According to Mrs Emma Danso, a mother and patient advocate, “This is no mere coincidence. I want to use the occasion of World Lupus Day 2022 to particularly celebrate the wonderful mothers who put part of their lives on hold to care for their children and loved ones suffering from lupus. They give care with love and fight with us through faith,” said Mrs Danso.
She expressed her desire of seeing the political leadership, corporate Ghana and all Ghanaians showing support for lupus and auto-immune diseases in Ghana.
She stated that Oyemam Autoimmune Foundation will continue to remain committed to advocating and raising awareness about lupus, through its Lupus Awareness Campaign.
When women act as mothers, wives, employees, public servants or function in any other role, they perform excellently and so it breaks my heart when they are unable to do so, due to the debilitating impact of lupus,” the OYEMAM leader stated.
When lupus strikes a person, the immune system turns against itself and attacks the health tissues and organs.
Accurate and timely diagnosis and treatment are necessary to arrest the condition and to ensure that the impact of lupus on a patient’s quality of life is cancelled or minimised.