“If we are able to get the right diagnosis of SLE or lupus, patients can get better care,” says Dr Ahmed Habib, Medical Superintendent at the Volta Regional Hospital (formerly Hohoe Municipal Hospital) in support of World Lupus Day.
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 and 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 patients reported having 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, 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 s/he 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.”
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 et cetera.
Some symptoms that lupus patients present include butterfly rash, oral or nasal ulcers, arthritis, serositis as well as other disorders involving the heart, kidney, lungs, nervous system, skin et cetera.
Lupus is primarily diagnosed by rheumatologists who use 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-ds DNA et cetera from their laboratory tests.
90 percent of lupus patients are women. Most of these patients are within the child-bearing age between 14-44 years. Each year Mother’s Day and Lupus Day are closely celebrated together in the May which is also Lupus Awareness Month.
This is no mere coincidence according to Emma Danso who is a mother and a patient advocate.
“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 lupus. They give care with love and fight with us through faith,” said Mrs Danso.
She expressed her heart desire to see more support from national leadership, corporate and all Ghanaians for lupus and autoimmune diseases in Ghana.
She stated that Oyemam Autoimmune Foundation has and will continue to remain committed to advocating and raising awareness to about lupus through its Lupus Awareness Campaign.
When a woman must be a mother, a wife, an employee, public servant or function in any other role they could excellently perform, it breaks the heart to be 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 self and attacks healthy tissues and organs.
Accurate and timely diagnosis and treatment are necessary to arrest the condition to ensure that the impact of lupus on a patient’s quality of life is cancelled or minimised.
Oyemam Autoimmune Foundation (OYEMAM) is a duly registered non-profit organization that undertakes advocacy, education, awareness creation, counselling as well as fundraising to provide support services such as medical assistance to patients.
It is the hope of OYEMAM to inspire hope in patients as well as those impacted indirectly by autoimmune diseases, especially lupus. The NGO through its Lupus Awareness Campaign advocates and raises awareness about lupus in Ghana.
The Foundation continues to call on the Government of Ghana to put autoimmunity on Ghana’s national agenda since many Ghanaians some of whom may be unaware suffer from autoimmune diseases and conditions. Oyemam Autoimmune Foundation is member of the World Lupus Federation.