Accra, May 18, GNA – A Global Survey from the World Lupus Federation has demonstrated that 40 per cent of Systemic Lupus Erythematosis (SLE) patients quit work or retire earlier than planned.
The survey also revealed that 60 per cent have had to make adjustments around the house to cope with the disease.
‘Seven out of 10 patients agree SLE affects their self-esteem and over half feels alone and powerless,’ the survey said.
The report, made available to the Ghana News Agency, indicated that Lupus was difficult to diagnose, hard to live with, a challenge to treat, invisible to others and strikes without warning.
Lupus is an autoimmune disease that develops when a person’s immune system which defends the body against disease becomes confused and identifies its healthy cells as foreign and consequently attacks its own healthy cells.
The SLE could affect any of the major organs in the body and symptoms could vary greatly in severity and intensity, common symptoms include debilitating fatigue, butterfly-shaped facial skin rash and joint pains.
The report said currently, there is no cure for the disease, but in most cases, it could be managed successfully with early diagnosis and with expert medical care and attention.
It said treatment should be aimed at reducing disease activity, treating symptoms and minimizing flares in order to reduce the risk of developing long term organ damage.
The World Lupus Federation said the most current treatment options including antimalarial, glucocorticoids and immune suppressant were not originally designed for the disease.
The report described the knowledge and understanding of Lupus as extremely low, although awareness was slowly increasing, thanks to the educational efforts of advocacy groups like the Federation.
‘People with the disease continue to experience a degree of prejudice and discrimination just because for many with the disease, Lupus is invisible,’ the report said.
Mrs Emma Wilhelmina Halm Danso, the Founder of Oyemam Autoimmune Foundation, an advocacy group championing awareness on Lupus, told the GNA that the disease could be an invisible disease and could take up to 11 years to get a proper diagnosis.
She said education and awareness could help to manage the system and also get an early diagnosis to prevent the disease activity from advancing.
Mrs Halm Danso said Lupus could affect any organ in the body in unpredictable and immeasurable ways.
‘The Foundation believes that the time to give Lupus and autoimmunity the needed attention in Ghana is now,’ she said.
Currently, treatment for Lupus varies widely and it was to reduce disease activity, treat symptoms and flares and reduce organs damage.
Mrs Danso said the Lupus disease was not contagious and you could not ‘Catch’ Lupus from someone else.
She said the Foundation was creating awareness about the disease in the country and it was their goal to get Lupus chronic conditions on the national agenda to bring relief to the many people and families suffering in silence and save lives.
Mrs Danso, therefore, called on policy makers, corporate organisations and other institutions interested in health issues to join hands in saving lives and inspiring hope in patients.
By Morkporkpor Anku, GNA