By Darlington Onedibe
Elizabeth Onuoha-Ozumba has spent the last 16 years navigating a body that is constantly at war with itself. Speaking at a recent awareness event held at the Lagos State University Teaching Hospital (LASUTH), Onuoha-Ozumba shared the profound physical, financial, and social hurdles of living with Scleroderma, a rare autoimmune condition, while calling for nationwide support and education to end the severe stigma attached to it.
Scleroderma is a rare condition where the body’s immune system attacks its own tissues, often presenting suddenly in adults with symptoms ranging from the swelling of extremities to the hardening of the skin.
For Onuoha-Ozumba, the 16-year journey has been a testament to resilience, though she describes it as “quite challenging.” To help others understand the reality of the condition, she authored a book eight years ago detailing her personal story, which served as a major milestone for local awareness.
However, clinical management is only one part of the battle. Onuoha-Ozumba highlighted the staggering financial burden that accompanies a diagnosis. Patients must routinely see dermatologists for skin hardening, dentists for oral complications, and other specialists.
The costly lifestyle changes beyond expensive medications that easily drain middle-income earners, patients must invest in specialized nutrition to stay healthy.
Cosmetic needs, such as high-coverage makeup for skin discoloration and extra clothing to cover affected areas, add emotional and financial strain for patients who become deeply self-conscious.
”It is a complete lifestyle change,” Onuoha-Ozumba explained. “At that point, you will need a nation to stand by you while going through the process.”
Because Scleroderma alters physical appearance, patients routinely face painful societal rejection. She noted that public ignorance leads many to mistake the condition for a contagious illness.
She recounted heartbreaking instances of discrimination experienced by herself and members of the community; Commuters in public transport frequently refuse to sit next to Scleroderma patients.
Patients face systematic discrimination and unfair treatment in their professional environments and Market traders often refuse direct hand-to-hand contact, demanding that patients drop their money on the table instead.
To combat this isolation, a vital network has been established in Nigeria. Dedicated WhatsApp support groups allow patients and their families to share daily tips, offer encouragement, and navigate the disease together.
Because Scleroderma is rare, government-owned hospitals like LASUTH and the Lagos University Teaching Hospital (LUTH) serve as the primary lifelines for diagnosis. Doctors at these specialized clinics act as the main contact points, referring newly diagnosed patients directly to Onouha-Ozumba’s support network, so patients can be added to the WhatsApp group.
With media houses and television crews present at the LASUTH event, Onuoha-Ozumba expressed optimism that increased visibility will spark change.
”Awareness is the only way to eradicate the stigmatization,” Onouha-Ozumba concluded, emphasizing that because the autoimmune disease keeps the body in a constant internal fight, patients need a supportive, stress-free environment to stay active and resilient against external illnesses.
