Emira Ukuta, a 17- year-old Sickle Cell Warrior granted TMG this inspiring interview on what it is like to live with Sickle Cell Disease (SCD), how she is fighting it daily and her hopes for the future.
Every year in sub Saharan Africa, more than 300,000 children are born with the sickle cell disease. Sickle cell disease is a genetic blood disorder affecting the red blood cells. It causes the cells to lose oxygen very easily, turning them from round shapes to crescent shapes that cause painful episodes known as pain crises.
For Emira Ukuta, life is much better now compared to what she has been through since she had the disease. Spinal fractures in two places due to complications of the sickle cell disease had her hospitalised for a long time. She describes that period as a painful and miserable one.
“Upon my discharge from hospital, I was placed on total bed rest for three months. I had to wear a corset, use a wheelchair and missed two years of school. It was a painful and miserable time for me and I hope that no one ever goes through that.”
All she kept wishing for was that the pain would go away. The prayer was soon answered. Between the long stay in hospital, pain, numerous medications and facing surgery, she would find relief in some supplements that were introduced to them.
Emira was to undergo surgery on her spine when help came her way.
In between raising money for the surgery and dealing with agonising pains, some supplements were introduced to her which improved her condition drastically. She shares her experience.
“My life back then was pain filled. I had a crisis almost every two weeks, some of which lasted over a week and I missed school a lot.
I was supposed to undergo spinal surgery to mend the fractures but then I was introduced to these supplements: Arthrizin, Immunozin and Fortrezin (all products of Rahma). After taking them, the fractures in my spine were stabilized so the surgery was no longer a priority and I get to focus on school and life.
To Emira, going to school is very important to her actualizing her ambition of becoming a Psychologist. She wants to help people who have emotional and psychological challenges.
“My life is a lot better now that I take Immunozin supplements. Since I started taking it, I hardly ever have a crisis and I haven’t missed a day of school this year,” she adds positively.
Asked if her current method of treatment is commonly available to other warriors, Emira says:
“I would like to believe that it is, seeing that it (Immunozin) is produced in Nigeria. The challenge I see is that of exposure. By that I mean that not many other Sickle Cell Warriors know about it but between myself and my Mother, we have been recommending it to all those we know.”
Emira’s mother, Barrister Uche Ukata speaks on how her daughter’s condition has affected them and if any other member of the family had SCD.
“No other person has it in the family, she says.
Emira’s younger brother is very protective of her and always willing to lend assistance should she require it. Financially, it’s been rough paying for her treatments when she is hospitalized and especially now that we are trying to save up for her Spinal surgery which has been put at about $20,000. Emotionally, it’s heartbreaking to see her in such pain during a crisis. But luckily since she started taking Immunozin, she hasn’t had any major crisis.”
So how did she hear about these supplements by Rahma and what advice does she have for people suffering from SCD or their families?
“My older sister and brother were taking Rahma supplements and found them efficacious and recommended them to me. This was at the point we were told about the need and cost of surgery for her spinal fractures.
Parents should ensure their Warriors take the necessary medication and supplements to enable them live healthy lives. I’ve recommended the supplements my daughter uses to quite a number of such parents and have sent them bottles of the supplements to try out. They have since started ordering theirs directly and are very pleased with the results. As a matter of fact, one of the Doctors that treated my daughter at the Sickle Cell Clinic at UNTH has indicated interest in running a private clinical review of the supplements. He was that amazed at the difference in her between the last time he saw her (when they diagnosed the fractures) and today.”
Emira had this to say about helping sickle cell warriors even further.
“Firstly, find an affordable cure to the disorder; end the stigmatization of people with sickle cell disorder, and educate people on the need to know their genotype. In addition, provide affordable medical care for sicklers and keep researching and improving on drugs to manage the disorder.”
There’s currently no widely accessible cure for sickle cell. Advances in bone marrow transplant and gene therapy has altered the landscape of sickle cell suggesting a cure is on the horizon giving hope for a brighter tomorrow.