Raolat Akinlade (popularly known as Dr. Rao Lee), 54 has two masters degrees in Health Promotion and Educational Technology/Instruction and a doctorate in Educational Leadership and Management.
Dr. Rao Lee’s life experiences epitomize the ideals of NEVER GIVE UP DAY, celebrated August 18 of every year.
Despite the ups and downs of SCD, despite many episodes of surgical interventions and countless blood transfusions, the tenacious robotics teacher has lived and worked in many countries in the Middle East and Europe.
In August 2022, the 54 year old Sickle Cell Warrior and proud mom of two beautiful daughters aged 22 and 26 moved to the Netherlands, where she had landed a contract employment to induct adolescents into the magical world of Artificial Intelligence.
This interview with Dr. Rao Lee sums up her doggedness and her perseverance in the face of life’s and sickle cell’s blows – a veritable icon of the NEVER GIVE UP DAY!
I have lost count of how many times I have had a blood transfusion
It was discovered I had Sickle Cell anaemia at age 2. My baby sister was born July 11, 1975, and diagnosed with sickle cell at around six months old. She died on Dec 31, 1976. A few of my best friends have sickle cell.
Mom said I was crying inconsolably when I was 2 years old. They did all they could to appease me but to no end. Eventually, when the crying didn’t stop, I was taken to the hospital. That was when it was diagnosed.
Back in the 1960s, genotype testing was not common. My parents were aware of the disease but since neither of them was sickly, they did not realize they had the sickle cell trait. I don’t think any parent will willingly give sickle cell to their offspring!
I have lost count of how many times I have had a blood transfusion, but I am sure I have had nothing less than 50 Blood transfusions in my life. I also have had an exchange blood transfusion (EBT). That was while I was pregnant with my daughter and was constantly in the hospital with crises. To manage my health the doctors decided on EBT when I was 5 months pregnant and I had to go get blood every two weeks for the duration of the rest of the pregnancy.
Life is very challenging for most people, and having sickle cell does not give you a pass. I wish it did
In 2003, I was having severe headache which was misdiagnosed as TMJ (temporal mandibular joint). I went to see my doctors on two separate occasions within 3 days (Wednesday and Friday). By Sunday morning I was taken to the emergency room because I was in a full body crisis. There they found that my HB level was down to 3%. Doctors initiated transfusion right there on the stretcher. I was in ICU for a few days.
Coping With SCD
Life is very challenging for most people, and having sickle cell does not give you a pass. I wish it did. I have a demanding job that does not end at 4:00 pm when the work day ends. I have to do a lot of my work at home and sometimes I work on weekends. I try to pace myself: if I am not at work, I am laying down on my bed. I drink a lot of water and I pray to God for healing. I also do my best to eat healthy and take all my prescribed medication.
Surgeries and Anesthesia
I have gone under anesthesia at least 20 times: Two cesarean sections, one knee surgery, a cholecystectomy to remove my gall bladder, a herniorrhaphy to remove my hernia, a hysterectomy, colonoscopy, 12 endoscopic retrograde cholangio pancreatography (ERCP), to clean out my bile duct and place a stent. My last procedure, which was non-surgical but still required anesthesia was in June 2021 when I went for an endoscopy to see what was happening in my digestive tract.
I have gone under anesthesia at least 20 times
Sickle Cell Carrier Unions
They should find love elsewhere because love is not blind. However, if they can afford it, they can opt in for IVF. Or they can adopt.
I am a prolific writer and becoming a published author has always been my dream. This is not my first published work, though. I was one of 30 authors in a book called Ignite the Hunger in You. I have also had my poem published in a book on grief.
TANWA is actually a spin of my memoir, so it did not take long to write. However, I edited quite a bit and toned the voice of the narration to that of a child. The next book in the TANWA series is actually taking me longer to write.
TANWA xrays how sickle cell affects the life of a patient and their family but does not define their life because they try to navigate and balance things with a positive mindset, and leaning on the divine. TANWA underscores the classical value of laughter as medicine. The book also educates the reader on the reality of the life of a sickle cell warrior.
The book is meant to educate the public and to help children with sickle cell identify themselves in the protagonist. As a child with sickle cell, I always felt isolated and different because of my illness. TANWA is to help little warriors. I am currently working on a coloring book as an activity book for kids in hospital with SCD or indeed any health challenge.
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ABOUT NEVER GIVE UP DAY: Founded in May 2019, the first organizers sought to channel the full swing of the summer holidays into an awareness day, at a time where people all over the world people cross paths, celebrate and enjoy life. The date coincided with the achievement of the French swimmer Philippe Croizon back in 2012 who completed a swim to connect five continents using custom-made fins. The swimmer who lost all of his limbs in an electrocution accident hoped his accomplishments would inspire others with disabilities. Never Give Up Day is a global celebration day focused on cultivating a mindset of determination.
ABOUT SICKLE CELL DISEASE: Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a ‘sickle’. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious health problems such as infection, acute chest syndrome and stroke.
Although SCD affects all races, it is more common among people of African ancestry. In sub-Saharan Africa, the SCD statistics are huge: in Nigeria, for example, an estimated 3 to 5 million individuals live with sickle cell anaemia while over 50 million ‘carry’ the sickle cell trait, the majority unaware.
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‘I am a medical doctor and public health specialist. I have a daughter living with sickle cell anaemia and went ahead to adopt a baby who was HIV POSITIVE. A medical doctor friend introduced JOBELYN to me. My daughter now lives practically free of SCD crises and complications. My adopted son is now HIV NEGATIVE!’ – Dr. Oluranti Ekpo, Nigeria.