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May is Lupus Awareness Month
Lupus is an autoimmune disease that causes the immune system to mistakenly attack healthy organs like the heart, skin and kidneys.
The cause of lupus is unknown, and the disease currently has no cure but it is suspected that certain genetic, environmental and hereditary factors play a role.
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Many individuals living with lupus experience unbearable pain, joint stiffness, swelling, headache, vision problems, seizures, kidney, brain damage and sensitivity to the sun, to name a few.
Symptoms
These symptoms, coupled with constant fatigue, interfere with their quality of life.
Persons living with lupus have unpredictable symptoms, and those whose signs of the disease show on the outside are likely to be stigmatised because of the symptoms that they may experience, especially for those who have skin involvement.
They may also be stereotyped as weak, lazy or incompetent because of their inability to effectively participate in many activities.
Prevalence
Research conducted by a Consultant Rheumatologist in the Korle-Bu Teaching Hospital, Dr Dzifa Dey, indicates that Ghana experienced an increase in the prevalence of Lupus from an estimated 2.4 per 1,000 persons to 5.28 per 1,000 persons in just two years.
The Rheumatology clinic in the Korle-Bu Teaching Hospital currently manages 1,995 patients in its Out Patient Department (OPD).
In the first quarter of this year, an average of 25 new cases were reported each month.
For a disease that is thought to be rare, the statistics are very alarming.
Need for awareness
Although the prevalence of lupus in Ghana is increasing, many people do not know what the disease and its accompanying symptoms are, or are unaware of its existence. There is a dire need for awareness.
It is in this spirit that the month of May is set aside for Lupus Awareness worldwide.
Webinar
The theme for this year’s awareness celebration in Ghana is “Lupus: The disease with a thousand faces," and in observance of the celebration, a webinar was held last Saturday to educate health practitioners on the different facets of the disease to enable them to feel more confident in managing Lupus.
In-person meetings with patients and caregivers discussed signs and symptoms, complications of lupus, side effects of drugs, importance of adhering to treatment, how to know when symptoms are not normal, the importance of a good support system, the role of the caregiver and a healthy lifestyle.
Steps
By now you must be wondering what you can do as a citizen to advance the cause of Autoimmune Disease Awareness in Ghana.
Three simple steps: To begin with, learn more. While we have done well as a country in promoting awareness about killer diseases and cancers, not much advocacy has been made about autoimmune diseases.
Secondly, help share the daily facts during the awareness month on all social media platforms (Facebook : Global Lupus Outstanding Warriors, Instagram: @trighana).
Finally, do wear purple in the month of May, starting from May 10, which is declared World Lupus Day. And if anyone does ask you why you are in purple, you know what to say, “May is Lupus Awareness Month” and I am helping to raise awareness.
The writer is a lupus survivor and a member of the Rheumatology Initiative Ghana (tRi) with help from Dr Dzifa Dey, Senior Consultant Rheumatologist, Korle-Bu Teaching Hospital.