“The side effects of the steroids used by lupus patients can be complete diseases for other people,’ says Mrs. Emma Danso, the Executive Director of Oyemam Autoimmune Foundation.
Findings of a global survey on steroid use by lupus patients indicate that diabetes, heart disease, organ failure, osteoporosis, and vision impairment are some of the major side effects of steroid use by lupus patients.
The survey was conducted by the World Lupus Federation from February to March 2024 to 7,741 patients from about 108 countries including Ghana.
Focused 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 address 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.
While 90% of patients said that their lupus symptoms improved with steroid use, 95% of respondents reported at least one side effect.
Also, 6 in 10 respondents reported experiencing at least one major side effect of using steroids; this was also true for 7 in 10 respondents taking steroids for more than five years.
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.”
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 handwritings 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.
Mrs. Danso said that lupus is a public health concern that is yet to receive the support it deserves in Ghana.
The awareness is low, and many people continue to endure health challenges undiagnosed.
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.
In Ghana, the minimum dosage of prednisolone, the common steroid prescribed for patients is 5mg.
This implies that even when a patient is in remission or doing well, the patient must be on a maintenance dose of 5mg daily; this is a high dose compared to developed countries where patients have access to lower doses.
The Executive Director of Oyemam Autoimmune Foundation 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.
However, until better and affordable options are available, lupus patients will continue to take steroids, a necessary evil.
Lupus is a chronic autoimmune disease that causes a person’s immune system to fight its own healthy organs and tissues.
Symptoms include fatigue, skin problems, oral or nasal ulcers, arthritis, serositis as well as other disorders involving heart, kidney, lungs, nervous system.
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.
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.
“It is always business as usual until that seemingly mild headache, uneasiness, infection or skin rash evolves into an incurable cruel disease like lupus.
Though it may sound like an exaggeration, that is the reality about the unpredictability of lupus. For me, it has taken the grace of God, support and community to bounce back and defy the odds. We need all on board to make lupus visible,” she intimated.
Contact:
Mrs. Emma Danso
+233 546 196 276
oyemamfoundation@gmail.com
info@oyemam.org
www.oyemam.org
About OYEMAM
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.
Since 2016, the Lupus Awareness Campaign has greatly contributed advocacy and raising awareness among different stakeholders 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.
About World Lupus Federation (WLF)
The World Lupus Federation (WLF) is a coalition of lupus patient organizations, united to improve the quality of life for all people affected by lupus.
Through coordinated efforts among its affiliates, the Federation works to expand global initiatives that create greater awareness and understanding of lupus, provide education and services to people living with the disease and advocate on their behalf.
About Lupus
Systemic Lupus Erythematosus (SLE), also known as lupus, is a chronic, inflammatory, autoimmune disease affecting 5 million people worldwide with about 90% of these cases appearing in females.
The body produces antibodies that attack its own healthy cells and tissues in addition to producing antibodies to protect against infection.
Lupus can affect many different parts of the body, including the joints, skin, kidneys, heart, lungs, brain and blood vessels.
The most common symptoms include painful and swollen joints, extreme fatigue, skin rashes, anemia, and kidney problems.
Typically, people with lupus have periods of illness, called flares, and periods of relative wellness, called remission.
Severity of the illness can vary; some people with lupus can continue to live a normal life, while others experience frequent, life-threatening flares that require critical care. As there is no cure for lupus, the goals of treatment are to achieve and maintain disease remission, prevent flares, and prevent damage to the body’s organs and tissues.