Mrs Emma Danso, the Executive Director of Oyemam Autoimmune Foundation, has reiterated that lupus is a public health concern that is yet to receive the support it deserves in Ghana.
Lupus is an inflammatory disease caused when the immune system attacks its own tissues.
The Oyemam Autoimmune Foundation in a statement copied to Ghana News Agency to mark this year’s Lupus Day, May 10, said findings of a global survey on steroid use by lupus patients indicate that diabetes, heart disease, organ failure, osteoporosis, and vision impairment were some of the major side effects of steroid use by lupus patients.
Mrs Danso said the survey was conducted by the World Lupus Federation from February to March 2024 to 7,741 patients from about 108 countries including Ghana.
She said focusing on the extent and impacts of steroid use for the care of lupus, the results confirmed the urgent need for both awareness of steroid side effects and ongoing research for more treatments and, ultimately, a cure for lupus.
In an addre
ss to observe World Lupus Day which is celebrated on May 10 each year, Mrs Danso shared some of the responses of patients from the survey to buttress the need for more awareness and supportive policy on lupus in Ghana.
She said while 90 per cent of patients said that their lupus symptoms improved with steroid use, 95 per cent of respondents reported at least one side effect.
She noted that also, six in 10 respondents reported experiencing at least one major side effect of using steroids; this was also true for seven in 10 respondents taking steroids for more than five years.
She said a survey respondent stated, ‘I absolutely hate the side effects of taking steroids, but unfortunately, I don’t feel there’s a better option out there when a bad flare comes on.’
Mrs Danso said other side effects which stood out in the findings include weight gain, mood swings, appearance changes, insomnia, increased appetite, and hair loss.
‘It is a hard reality to admit that the very medication supposed to help correct the
debilitating handwriting of lupus on a patient can cause more and/or new problems as side effects. This dilemma was a huge personal challenge for years,’ she said.
She said the awareness was low, and that many people continue to endure health challenges undiagnosed.
‘The side effects of the steroids used by lupus patients can be complete diseases for other people,’ she stated.
‘For diagnosed patients also, lupus healthcare is very expensive. The easy option is to take steroids in addition to other options for treatment. Many lupus patients take steroids as part of their treatment even though the aim of lupus treatment is targeted towards elimination of steroid use.’
She said in Ghana, the minimum dosage of prednisolone, the common steroid prescribed for patients was 5mg.
She noted that this implies that even when a patient was in remission or doing well, the patient must be on a maintenance dose of 5mg daily; this was a high dose compared to developed countries where patients have access to lower doses.
T
he Executive Director appealed to the relevant authorities to make 1mg and 2mg prednisolone tablets available to patients in Ghana.
She explained that most patients who use steroids default in their treatment because of the fear of the potential side effects; declaring that however, until better and affordable options were available, lupus patients would continue to take steroids, a necessary evil.
She said lupus was a chronic autoimmune disease that causes a person’s immune system to fight its own healthy organs and tissues; and that its symptoms include fatigue, skin problems, oral or nasal ulcers, arthritis, serositis as well as other disorders involving the heart, kidney, lungs, and nervous system.
She mentioned that causes of lupus include stress, hormones, genes, infections, and taking some medications.
‘There is currently no cure for lupus, but it can be well managed if diagnosed early and appropriate treatment is adhered to. Lupus is an unpredictable disease that can attack anyone at any time and
hence awareness and supportive policies are critical,’ Mrs Danso said.
‘The impact of lupus transcends patients and their immediate families. It is, therefore, imperative that everyone becomes aware of lupus and the reality of autoimmunity in Ghana,’ she added.
Oyemam Autoimmune Foundation 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.
Source: Ghana News Agency