To the casual observer, Ekiti State-born Miss Kofoworola Olaofe was only trying to familiarise herself with the environment as she paced up and down the reception area. It looked normal that she wanted to read the captions of the historical photographs that lined the walls.
Again, this reporter still didn’t get it when Kofoworola knelt down beside the chair she should have sat on as we prepared to commence the interview.
Thinking that she was just being polite, the reporter urged her to sit down, but the young lady replied that sitting down is a luxury she cannot afford. That set the tone for the encounter.
Born on March 14, 1988, Kofoworola appeared normal as a growing baby and there was nothing untoward about her growth to raise the suspicion that something was remarkably wrong with her spines … until she was 10 years old.
She took up the narrative. “My mom discovered my condition by chance. I was preparing to take my bath that fateful morning when I was already 10 years old. As I danced before the mirror with the towel tied around my chest, my mom grabbed my arm and would have spanked me, but she suddenly noticed a swelling on the right side of my spine and ran her hand on it. She asked if I felt any pain, to which I replied in the negative.”
Events unfolded rapidly afterwards, as Kofoworola was taken to the then State Specialist Hospital, Ado-Ekiti, where she was diagnosed with scoliosis, a disorder that leads to the curvature of the backbone.
She was referred to the University College Hospital, Ibadan, in August 1998 where, she said, the doctors were not only ignorant of her condition, they were also unable to help.According to her,they simply turned her into a human guinea pig.
Kofoworola said, “At UCH, I had an X-ray which revealed that the curvature on my spine had advanced to 30 degrees. The doctors informed me that they did not know the cause and that there was no treatment on offer.
“Despite this grim prognosis, I was told to visit the hospital every three months for what they called ‘observation.’ I did that for some time before I decided against it. This is because on each visit, the doctors would make me strip and they would assemble the medical students who had a field day using a live human for experiment.
“The consultants would use a biro to point at many parts of my body while explaining what they thought they could see. They had no feelings for me and, at a point, I told my mom that I didn’t want to continue the shameful treatment. That was the last serious encounter I had with any medical doctor about my condition, especially because I have been told that there was no treatment for the disorder.”
And, as if to underscore her disconnect with her UCH handlers, Kofoworola said by the time she visited the hospital in 2006, eight years after the last time she was attended to, her doctor did not recognise her.
The doctors at the State Specialist Hospital, Ado-Ekiti, were gracious, though. They taught her certain physical exercises that helped her for some time. Asked why she discontinued with it, Kofoworola said the exercise worked but only temporarily, as it would have been more beneficial if she had discovered it when her condition was still at the early stage. By the time she commenced the exercise, she said, the deed had been done and at a point, it was obviously a waste of time.
Asked if, as a growing child, she went through the normal processes of sitting, crawling and walking; or if she noticed any abnormality about her before her mom’s observation, she had this to say, “To start with, my mom told me that though I sat as a baby, I did not crawl before I started walking. But then, I could remember that as a child, whenever my peers and I were singing the song ‘My head, my shoulders, my knees, my toes’, unlike others, I discovered that my hands would not touch my shoulders when I attempted to touch them but they would just hang in the air.
“Again, my fingers didn’t touch my toes when I attempted to touch them in the course of the song, as I found it absolutely difficult to bend low enough to be able to touch my toes. Worse, I needed to support myself with my hands firmly gripping the floor whenever I sat down. All these were indications that something was wrong, but nobody knew until I was 10 years old and the disorder had advanced to a significant point.”
Even at that, it’s not as if Kofoworola simply folded her arms and allowed things to take their course. The first of five children of retired accountant and teacher, Kofoworola obtained a degree in Zoology from Obafemi Awolowo University, Ile-Ife in 2011 and is currently doing her national youth service in Ekiti State, her home state.
Again, she has not relented in her efforts to find solution to the disorder, though the road has been tortuous, and assurances for successful treatment really lacking.
One of her doctors informed her that he would have recommended the services of an unnamed Enugu-based spine specialist to her, but he was unsure the doctor would be able to help her, as her condition has advanced remarkably.
Kofoworola also discussed with a chiropractor, one Dr. Clinton, who warned that unless she was handled by an experienced specialist, her chance of survival is 50:50. Even at that, she was told, she could develop paralysis if the doctors accidentally poked on her spinal cord.
She was also told that there were specialists she could see in Ghana and Israel, but she has yet to determine to see them. She said the warning that went with each suggestion was such that she needed to think through.
Concerning her inability to sit down, Kofoworola said it was because when she does, she finds it difficult to breathe. “This is because my internal organs are choked together, instead of being spread in appropriate places. As such, my lungs are packed in one side, making breathing seriously difficult.”
Considering the fact that she travelled from Ekiti to Lagos for this interview, ‘How did you do it since you don’t sit down,’ the correspondent asked her. She revealed that she knelt all the way, otherwise she would have lay down.
One of the people who accompanied her to Lagos said it was the same thing when she had to make a journey by air. She only managed to sit down for the mandatory use of seat belt at takeoff. Once the aircraft stabilised, she assumed her usual position of kneeling down, this time for seven odd hours. And she repeated the same during the return journey!
Now 25, Kofoworola has three passions: one, to sensitise members of the public to the reality of the disorder so that doctors and patients alike can tackle it before it gets out of hand.
She also desires to run a non-governmental organisation that will provide support and also serve as a succour to those suffering from the disorder.She says she needs help in this regard.
Finally, Kofoworola wants to have her autobiography published, as it contains the details of her journey through life under the heavy yoke of scoliosis, complete with advice for families who may have children grappling with the disorder.
Physicians describe scoliosis as a sideways curvature of the spine that occurs often during the growth spurt just before puberty.
General practitioner, Dr. Paul Nnadozie, say, “While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown.
“Most cases of scoliosis are mild, but some children (like Kofoworola) develop spine deformities that continue to get more severe as they grow. Severe scoliosis can be disabling. An especially severe spinal curve can reduce the amount of space within the chest, making it difficult for the lungs to function properly.”
Nnadozie says children who have mild scoliosis are monitored closely, usually with X-rays, to see if the curve is getting worse. “In many cases, no treatment is necessary,” he explains, “though some children will need to wear a brace to stop the curve from worsening. Others may need surgery to keep the scoliosis from worsening and to straighten severe cases of the disorder. Severe scoliosis can cause back pain and difficulty breathing.”
In terms of risk factors, the physician says signs and symptoms of the disorder typically begin just before puberty — between ages nine and 15.
He also says although both boys and girls develop mild scoliosis at about the same rate, girls have a much higher risk of the curve worsening and requiring treatment.
He says scoliosis can run in families, but most children with the disorder don’t have a family history of the disease.
“Complications of the disorder include difficulty in breathing and inability of the heart to pump blood efficiently, as the rib cage may press against the lungs and heart. Again, patients are more likely to have chronic back pain than are people in the general population. And as scoliosis worsens, it can lead to unlevel shoulders, prominent ribs, uneven hips, and a shift of the waist and trunk to the side,” the doctor says.
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