Abrefa Cecilia, 37, holds an HND in Fashion Design from Kumasi Polytechnic (now Kumasi Technical University). She was diagnosed with sickle cell anaemia at the age of one. Surprisingly, Cecilia has never received blood, an uncommon phenomenon for someone living with sickle cell anaemia anywhere in the world. She speaks with Tosin Fawemida about life with SCD
Would you make genotype an issue when ‘Mr. Right’ finally comes along?
Certainly, I wouldn’t want my offspring to go through what I have been through.
What event(s) preceded your diagnosis with sickle cell anaemia?
My legs started to swell often when I was about 6 months and I was always crying.
How do you cope with the challenges of daily life with SCD?
Coping with SCD on a daily basis is not easy, but I wake up every morning with the mindset that no matter what, I will make it. And even on days that crisis renders me ‘immobile’, I don’t think about the pain, but I rather keep myself busy noting down the things I would want to do when the pain goes.
Has sickle cell affected your outlook on life?
SCD has very much affected my outlook on life. Growing up with doctors “predicting” how long I could live, and me making it this far has really made me stronger. Some said I wouldn’t make it up to 18years, others said 28, but here I am at 37 years and still going. Making it through all these years made me realize that life indeed is a very beautiful gift from God that should not be wasted.
life indeed is a very beautiful gift from God that should not be wasted.
What do you think about sickle cell carriers getting married (to sickle cell carriers) if they knew of the risks to their offspring?
This would actually be so unfair, I mean looking at the kind of pain one goes through during crisis. I think every sickle cell carrier should do their best to avoid such situations, and it will be a huge disadvantage to both sickle cell carriers and their offspring.
What has been your most memorable sickle cell ‘crises’?
My most memorable sickle cell crisis was when I became paralyzed at the age of seven. I also experienced leg in secondary school and arm ulcers while in the Polytechnic.
What led to the paralysis you experienced as a child?
I wasn’t ill prior to the paralysis. I just woke up one morning and realized that I couldn’t get up. I couldn’t feel my legs at all, and I wasn’t able to sit on my own without support.
How did your parents take it?
My parents were very devastated then, especially my Dad. He was ready to go to all lengths to make me walk again. He is late now, but my equally loving mum is still alive.
How long were you in hospital for treatment? Was your healing complete and how long did this take?
I was immediately taken to the Komfo Anokye Teaching Hospital (KATH), Kumasi. Several doctors attended to me for over a month, but none was able to diagnose what was wrong. Some even suggested I had not been walking before. It was not common knowledge then – even among medical professionals – that SCD could cause paralysis!
Eventually, I was discharged from the hospital, still not able to walk or sit without support. I visited regularly for physiotherapy at the same facility.
The healing took over six years. I am actually still in the healing process because my legs are not as strong as they used to be, but my gait has improved over the years. I am now able to walk and sometimes run a little without any assistance.
How did this affect your education?
It severely disrupted my education. I had to stay home for two more years to learn how to walk all over again. In addition I had to skip a year in secondary school because of leg ulcers. During my Polytechnic days, I had ulcers on my left underarm. It was all very challenging but my family gave me full support because I was very brilliant.