Sickle Cell Awareness Month: Q&A.

NAME: Yusuf Mustapha

AGE: 25

EDUCATIONAL QUALIFICATION: B.Sc and M.Sc Public Health.

Marital Status: Single

WOULD YOU TAKE INTO CONSIDERATION THE GENOTYPE OF YOUR PARTNER BEFORE MARRIAGE? WHY?

Well, with the advancement in science and technology having a kid without sickle-cell disease by parents with the disease may be possible, since scientist now can separate genes from a developing organism to have the perfect organism. I have read a research where a person with sickle-cell disease been cured with stem cell transplant that was obtain from a suitable donor.

It also said the procedure is dangerous and expensive, but if I happen to marry someone with my condition; there is a possibility of considering gene removal or stem cell transplant to have a healthy child.  However, to answer your question, I will not consider having a kid if my partner has the disease – seeing what my parent have gone through to make sure I have survived to adulthood, I don’t think I can do it even though things are going to be different compared to two decades ago. The chances of me marrying a partner with sickle cell disease is little to none.

HOBBIES: Reading, writing and conducting research, helping people with sickle cell disease or disabilities.

AGE AT DIAGNOSIS WITH SICKLE CELL?

I got diagnosed with sickle-cell disease at an early age, around the age of four when the crises started. I was diagnosed with the haemoglobin SS genes.

WHAT EVENT(S) PRECEDED YOUR DIAGNOSIS WITH SICKLE CELL ANAEMIA?

I can’t tell you the specifics as I don’t know them either, but my parents knew about the disease the moment I started having frequent illnesses/crises. My parents are educated, and my dad have a doctorate (PhD), he always wants to know things and why they happened, his curiosity help him get ahead of the crises and started to read everything about the disease and its rules. The constant monitoring and supervision from them helped my condition and I survived to this point.

HAVE YOU EVER RECEIVED BLOOD TRANSFUSION? IF ‘YES’, HOW MANY TIMES?

Fortunately for me, I’ve never received blood transfusion. This is due to so many reasons that I can’t list them all – As I said my parents read a lot about the disease and they understand what a person with the disease supposed to do and what not to. They always make sure I’ve taken my folic acid and other medications and I was under constant surveillance, from keeping me warm, feeding, and to taking vitamins. They went above and beyond to see everything goes as plan that day and the next. When I reached the point of taking care of myself, they taught me how to do things on my own – because of my stubbornness my mom always check-up on me to make sure that ‘YES’ I’m doing it right, like taking my daily medication, wearing cardigan during winter and drinking plenty of water. My dad on the other hand gave me a phone as a kid just so he can check-up on me at least three time a day, more when I’m sick that day.

WHAT HAS BEEN YOUR MOST MEMORABLE SICKLE CELL ‘CRISES’?

The recent and last crises I had was in Funtua, Zaria. I went there to do a remedial studies after completing high school, it was the first boarding school I have ever attended, and went with expectation that I can finished the remedial without having any crises. The disease immediately proves me wrong, it was the most severe crises I have ever encounter since becoming an adult. At that time, I was not keen to attending the school but there was nothing I can do but to comply. Because of this, my parent stopped agreeing with anything I said pertaining going home.

When I called them and told them I’m sick they said it is an excuse to come home and they are not going to allow it, the school has a restriction policy toward students going home without reason, and as my parent haven’t approved it, and the school denied my request too, and suggested to visit the school sickbay. The school has no actual doctors, all they do was giving minor pain killers like Panadol, paracetamol and other common medications. They have zero skills or idea on how to handle sickle cell disease – I ended up returning to the hostel and I had ran out of my ‘’go to’’ medications. Because of the lack of medication and proper care the crises lasted for about two weeks and all I can do at that time was taking my folic acid and a hot shower. The shower tends to reduce the pain for about 30 minutes before things hit the wall again.

There was a time I thought the crises will end with me dying, – at that time, I was okay with it because I have tried all the pain relief trick in my book and nothing works. The only people I’ve at that time was my roommates who helped me most of the time, by getting me food and taking water to bathroom – my high school friend was also there with me, but lived in different hostel block, he always comes in the morning to check on me, and brought some breakfast and in the afternoon after his classes to help me with other things. Since then, every sickle crisis that comes, I look at it as minor and become more resilient to pain.

HOW DO YOU COPE WITH THE CHALLENGES OF DAILY LIFE WITH SICKLE CELL DISEASE?

Two-words, Advance planning. I know where my weaknesses are, and as sickle cell disease has no apparent warning signs – I don’t take chances, when I have something to do I tend to plan it ahead of time and when the crises comes I’m ready to drop everything and look after myself.

HAS SICKLE CELL AFFECTED YOUR OUTLOOK ON LIFE? IF ‘YES’, HOW

NO, I know what I’m in for, and I plan things in advance even as a kid, thanks to my parents.

WHAT DO YOU THINK ABOUT SICKLE CELL CARRIERS GETTING MARRIED (TO SICKLE CELL CARRIERS) IF THEY KNEW OF THE RISKS TO THEIR OFFSPRING?

With the advancement in sciences and medicines, the risk is minimal if they have the financial means to look after themselves, and the kids in the future. They also need to be willing to drop anything to look after the kid at the time of crises. Another important thing is ‘LOVE’, if there is true love between them, it needs to be strong as sickle cell disease has ways of testing it – if they can’t afford any of these things, it is best if they didn’t embark on the journey, as everything in their life will be tested when they get a child with sickle cell disease.

HOW DID YOU CARRY OUT THIS FEAT DESPITE THE INCONVENIENCES OF SICKLE CELL DISEASE?

As mentioned before, I’ve gotten used to planning things ahead, just so my sickness doesn’t get in the way of things. As someone with sickle cell disease, the only way to reduce interference of the disease in my life is to always be ahead of it. For example, when a semester starts, I tend to find out all the things I need about the end of semester examinations, presentations and assignments within the first two weeks of the session. When I got all the things I needed for the presentation or assignments I always start it immediately. There are many benefits of early starting on things for me. Firstly, there is plenty of time for me to get feedback about the assignments or presentations from the lecturers, – I make possible adjustment on the work and keep it aside and move on to my next goal. Another benefit was having a little peace of mind, when my sickle cell crises started – I can keep everything aside knowing everything is under control while I recover from the crises. 

WHAT DO YOU NORMALLY DO WHEN SICKLE CELL DISEASE PREVENTS YOU FROM ATTENDING CLASSES?

Well, sickle cell crises have never prevented me from attending lectures since I started university. I learned to manage and maintain mild pain crises when the crises start, most of the time I normally take painkillers before going to bed when I notice the signs of crises. Also, I have an effective way of handling joints and back pains without wasting the day in bed – I manage my pain crises while at the same time carryout my daily activities like attending lectures and conferences in the university.

ARE YOU LIKELY TO GO INTO ACADEMICS?

After the completion of my B.Sc, I decided to go for masters in the same field which is public health. I have learnt a lot about sickle cell disease and disability during my degrees as I have made them my focus – all the researches and projects I have done during my degrees surround these health issues. The main major project that determine the compilation of the studies (B.Sc) was a literature review on ”Exploring the experience of individuals with physical disabilities regarding stigma and discrimination during the childhood”, and I got an ‘A’ in it. My masters degree project is a systematic review that focused on ”Exploring the challenges individuals with sickle cell disease and their families face in African communities”. In a near future, I plan on becoming a sickle cell and disability consultant.

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