On May 10, Uganda joined the rest of the world to celebrate World Lupus Day.
Lupus is a little known disease that can go undetected and undiagnosed for years. Lupus is unpredictable, triggering different symptoms in different patients. A chronic illness, it can attack many different parts of the body.
Mariam Nassejje Ssebugwawo, a Lupus patient and driving force behind Lupus initiative Uganda said she had lived with disease for over 12 years.
She said it was hard to diagnose because it is not widely known. Like many other Lupus patients, symptoms present in different ways.
For some, there is constant bleeding through the nose, gums while some become anaemic.
Nassejje said she came up with the initiative to help make life bearable for other sufferers.
The condition is an autoimmune disease, which means that a person’s immune system-the body system that usually fights infections- attacks healthy tissue instead. The disease causes inflammation and pain anywhere in a patient’s body.
The Lupus Initiative Uganda has so far registered 32 members however according to Nasejje.
“It is likely that the number is a lot more because many cannot afford to carry out tests to diagnose the disease, while others believe it is witchcraft,” she said.
The disease is manageable but has no cure. Hydroxycholoroquine is a drug said to work well for lupus.
Yet with the belief that hydroxychloroquine was an effective remedy for Covid-19, many pharmacies hoarded the drug making treatment expensive for the lupus patients.
The initiative asked government to help more awareness about the disease and include them among groups of people that need funding.