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Living with Scleroderma is not a Death Sentence

newscentral.africa 2 days ago
Living with Scleroderma is not a Death Sentence

According to the National Institutes of Health (NIH), Scleroderma is an autoimmune disease that causes inflammation and fibrosis (thickening) in the skin and other body areas.
News Central TV hosted Author and Scleroderma Advocate, Elizabeth Onuoha Ozumba, Consultant Rheumatologist at Lagos University Teaching Hospital, Dr Igebu Etseoghena and Lawyer and Scleroderma Warrior, Tara Aisida on the Breakfast Wellness Show as they discussed about the autoimmune disease.
Dr Etseoghena discussed the disease’s manifestations, including swelling of the digits that progress to skin hardening.
She explained the disease’s dermatological presentation, which includes discolouration of fingers and toes, pain on the tips of the digits, and a lack of blood flow to the digits, which causes them to turn blue.
In addition, she mentioned organ manifestations, which can affect the lungs, causing breathing difficulty or shortness of breath; renal manifestations, which involve the kidneys; and heart manifestations, where one has hypertension of the heart.
She noted however that Scleroderma may only present with skin swelling and can be controlled if detected early.

Elizabeth Onuoha Ozumba shared her story as a scleroderma warrior who faced the disease head-on and won. For her, it began as swelling of the digits and stiffness of the wrists. Several tests were done and nothing was detected but the pain persisted. After sending blood samples for screening outside the shores of Nigeria, the test result returned positive for Scleroderma.
Thanks to the dermatologist and medical doctors who had first-hand knowledge of the disease, Mrs Ozumba has managed the condition for 14 years and counting.
It is worth noting that Scleroderma is incurable but not transmittable.

Tara Aisida also shared her experience with Scleroderma. As an activist, Aisida, diagnosed in 2023, said her journey started when she turned 50. It began with allergies and despite seeing a dermatologist, the disease was undetected.
She began to notice discolouration on her cheeks and her scalp began to shed. She experienced extreme fatigue, as she couldn’t walk for long distances, and her mouth couldn’t open wide. Getting back to her dermatologist, she was told to run more tests as Scleroderma was suspected.

Living with Scleroderma is not a Death Sentence

When asked about the challenges experienced with Scleroderma and creating awareness, Dr Ozumba said that people with Scleroderma are stigmatised as the disease changes their physical appearance. People often think you have a communicable disease because of the physiological changes.
Aisida talked about the medication (Immunosuppressants), which is expensive, stating that the cheapest drug is N30,000, and those who use two packs of the drug spend N60,000 per month on medication alone.
Dr Ozumba highlighted that Scleroderma changes one’s lifestyle and physical appearance, limiting one to a specific kind of clothing.
The doctors are soliciting the support of the Nigerian government to help people living with Scleroderma.

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