On the heels of the global observance of the World Scleroderma Day on June 30, Elizabeth Onuoha Ozumba, a part-time craft coach, who lives with the autoimmune disorder, released her book titled, “Living with Scleroderma” in Lagos.
Scleroderma is a frightening disease occasioned by the presence of an overactive immune system in the body that turns around to attack and destroy the body. It is characterised by skin hardening and discoloration, making the usual ease of movement difficult for the afflicted. It has no cure but the only cheering news about it is that it is not contagious.
At the book launch which was held at the Nigerian Institute of Journalism, Ogba, the event drew medical experts, especially those who have worked on the disease.
For these experts, scleroderma is one of the challenges for dermatology. Dr. Adefemi Adelowo, who chaired the event, observed that due to the helplessness of science in demystifying scleroderma, many have attributed it to a spiritual attack. Some sufferers had been swindled by those who claim to have the spiritual powers to cure the disease.
For a survivor, the pain is both physical and emotional because of the stigma associated with it. Meanwhile, it can be managed to preserve lives.
To create awareness about the disease and help survivors deal with some of the challenges related to living with scleroderma, Ozumba wrote the book based on her first-hand experience and the dogged research she did through the years.
Her personal physician and Consultant Dermatologist at the Lagos University Teaching Hospital (LUTH), Dr. Ayisha Akinkugbe who wrote the forward to the book, described it as a “must-read’’. Glancing through the 11-chapter book, she echoed the words of the author, “Never judge what you don’t understand.”
She chronicled the early discovery of the disease by the author as well as the torturous journey from one hospital to another in frantic search of competent healthcare experts.
Akinkugbe recalled how the diagnosis was done and how Ozumba kept her abreast of every information on scleroderma.
In a chat with THISDAY, she revealed some of her personal experience that led to writing the book.
She said, “I started seeing the symptoms sometime in 2010. I didn’t know what it was until February 2011 when I was finally diagnosis. Before then, I was going from one hospital to another, doing tests that didn’t reveal anything. I had my blood samples flown to India and I was told that I had an auto-immune disorder.
“According to science, no one knows the actual cause. The immune system is supposed to protect us and ward off diseases and fight infection. But in this situation, the immune system is overactive and starts to destroy the body and attack healthy cells.
“It is a rare condition and most people don’t know about it. Our Ministry of Health in Nigeria is clueless about it. It affects a few people. It has no cure but you can suppress your immune system with immune-suppressants which are not readily available and are very expensive.
“You have to be conscious of the environment, stay away from too much sun because the sun radiation aggravates the condition.
“Some of the psychological effects of living with scleroderma include depression and low self-esteem. With support from family and friends, it can be easier to live with the disease.
“More importantly, government support is needed to enhance research and support victims who may lack the finance required to cope with the cost of managing their health.
“People are immobile when their skin becomes really tight. In the western world, they have social security system in place that takes care of them. It is not like that in Nigeria.
“As I am speaking to you now, someone who lives with scleroderma in Abuja just lost her job. She had a “flare up’’, that is a situation when the disease worsens.
“There are some that it disfigures the fingers so much that they cannot really work. Some can work but some can’t. That is why I have expressed my feelings in the book so that people will be aware of it.”
Chapter six of the book offers some unique counsel on how to use make-up and grooming to camouflage the skin discoloration while the following chapter has an interesting tilt to the narrative with the title, “Dating with Scleroderma.’’