SCD is a disorder that affects the entire existence i.e physical, mental, emotional and spiritual well being. I felt women need a platform where they can be encouraged, relate with each other and get adequate information for survival – the recipe for a fulfilled life.– Tunrayo Adenle-Oluwole
Sickle Cell Warrior, Tunrayo Adenle-Oluwole, 39 was once Chief Personal Makeup Artist to Her Excellency, Chief Mrs. Florence Ajimobi, immediate past First Lady of Oyo State, whose husband, Isiaka Ajimobi, succumbed to the Coronavirus in June. A distinguished SCD advocate and Founder, Sickle Cell Women International (SWINT) Foundation, Mrs. Adenle-Oluwole looks back upon her life so far with SCD, why she ended up marrying a sickle cell carrier and her vision for SCD awareness in years to come.
Age at diagnosis with sickle cell
I was diagnosed at 6 months with type SS. I had two brothers with the same, but they are late. I developed AVN at the age of 8. It reared its head again when I was 31, leading to surgery.
Yes on two occasions, when I had hip replacement surgery and when I gave birth to my son.
Most memorable crises
Every crisis had its own peculiarity but I would say the most challenging one for me was when I had AVN. Till date I still wonder how I survived that painful period.
I can’t count the number of times I have been hospitalized, I really can’t put a number to it.
I take each day as it comes. I have had to reprogram my day according to how I feel, then I flow with it.
God has blessed me with a strong heart and a positive attitude to life.
When I was young, I used to blame my parents for giving me SCD. Not any more!
Opinion On Carriers Getting Married
I’m indifferent to two carriers getting married to each other, what I advocate is that everyone should make a well informed decision and it’s outcome. With science and technology a lot can be achieved.
After a long search for the elusive AA, I married a carrier of the sickle cell gene. We took an informed decision and opted for Pre Natal Diagnosis. My first child turned out to be AS, while a second pregnancy was found to be SS. I had to let it go.
First Lady’s Make-Up Chief
I did Her Excellency Chief Mrs. Florence Ajimobi’s 50th birthday make-up two years before she became First Lady of Oyo State. Once she became First Lady, the need for a personal make-up artist arose and I was recommended by a client who is related to her.
During one of my crisis episodes, I had to divulge the fact of my SCD, of which Mrs. Ajimobi was calm, understanding and supportive. Sometimes I missed appointments, though my staff usually stood in for me.
Challenges of Being a Make-Up Artist
Being a make-up artist requires a lot of standing for long hours, moving around, and traveling, which takes a toll on the health of a Sickle Cell Warrior and can make one go into crisis during or after the job. Sometimes, due to sudden crisis you can’t make it to already booked appointment – you will have to look for someone to do the job on your behalf or refund the client’s money. This is not good for your reputation as a business owner and it makes it difficult to retain clients.
Still, I would not baulk from recommending this vocation to Warriors, male and female. As long as you have passion for the profession, the challenges will not overwhelm you.
SICKLE CELL WOMEN INTERNATIONAL (SWINT) FOUNDATION
The rationale behind SWINT Foundation came when I realized that a lot of people are living in denial because of the fear of stigmitzation.
It is difficult being a woman and more difficult combining it with sickle cell disorder. It is not easy combining the SCD challenge with marriage, motherhood, and career.
SCD is a disorder that affects the entire existence i.e physical, mental, emotional and spiritual well being. I felt women need a platform where they can be encouraged, relate with each other and get adequate information for survival – the recipe for a fulfilled life.
We assist in the payment of hospital bills and procurement of routine drugs for members hampered by finances. We also donate drugs and hospital consumables to hospitals. We bring in seasoned professional to educate us about matters that affect us as women living with SCD
By the help of God, government and kind hearted men/ women in Nigeria and in Diaspora we hope to bring succour to every woman living with SCD that comes our way by educating, empowering and adding value to their existence.
People living with SCD should stop hiding. Let us come out and speak out to bring in the much-needed change we desire in the health care system.
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