Exclusively with Joy Waititwa as she takes us through her journey living with sickle cell

Joy Waititwa
By: Peter Aowa

Good morning, Ms. Joy and welcome to The Mt Kenya Times.

Good morning to you too, and thanks for having me.. am honoured.

Briefly tell us who you are?

Am Joy Watitwa aka Joy Watts as known to many, from Bungoma county. 2nd born in a family of 8. Am a sickle cell warrior by birth and an advocate on matters of sickle cell.

What is your academic journey?

I started schooling at Kanduyi DEB primary school where I did my KCPE before joining Namachanja high school. Later on, I joined the Kenya Institute of Applied Sciences.

Any four major challenges you’ve encountered in your education journey?

  • Stigmatization and rejection from schoolmates and teachers.
  • Ever being absent from school due to pains all the time.
  • Wasn’t allowed to participate in extracurricular activities because no one believed I could do it.
  • Constant bullying at school.

This always made me fear going to school

How would you define sickle cell anemia in your own words considering the experience you’ve had?

To me sickle cell disease is like a monster, it’s like being locked down in a dungeon and left to fight with this monster thing for the rest of your life. Whether you get weak or tired it’s there you have to face it day in day out for your survival. Such a devastating, painful disease that is so derailing. It eats you up and weakens you day and night with the motive to finish you physically, mentally, emotionally and financially. It can never be wished even on your worst enemy

At what point did you get to know you were suffering from sickle cell anaemia?

I was born a weakling due to sickle cell disease and this made me miss school on a number of occasions since I was constantly in and out of hospital. It never really bothered me that much till mid-primary when I really wondered why I was the only sick kid in school and at home and that’s how it dawned on me that I had SCD, so I just had to accept I was a special kid and move on with life.

What are some of the special care measures for people suffering from sickle cell disease?

  • Proper nutrition, eat foods that are of benefit to your body.
  • Routine medical checkups to be able to know how you are faring on and also help know of any looming crisis.
  • Hydrate hydrate hydrate. Always take plenty of fluids
  • Ensure to take your routine medications.
  • Avoid strenuous activities, do not go beyond what your body can handle.
  • Be your own doctor, watch out for anything that isn’t normal.

Could you please tell us what has made you strong enough to challenge this?

Christ. He has been my everything. Yes I have people, family and friends I can rely on, but my strength is in Christ. He has made me push through this and still is with me all through.  He says he can never give us what we are not able to handle and so I believe even in the worst pain ever, he is always there giving that assurance.

Who are these five people you attribute to your success so far? Needless to say, those who have been of great support to you?

  • My doctor, always on call whenever I am in pain.
  • My mom and daddy.
  • My siblings.
  • My church.
  • few genuine friends and the extended family at large.

Growing up, did you encounter challenges especially from your schoolmates, stigmatisation to be specific?

Yes sure, a lot of it, no one ever wanted to associate with a weakling and even the society saw me as a curse. I could hear whispers wherever I passed, people calling me all sorts of names and this made me feel so lonely and depressed most of the time it killed my self-esteem. At some point I was chased from the dining room because I was a weakling.

What is your most outstanding bible verse?

Psalms 91. It boosts my morale when I am at the end of it all.

At what age did you experience the most pain?

I can’t really talk about age but I remember my worst years.

2003, 2006,2017,2018,2019,2020, 2021… It seems like it is getting more severe as years go by.

As a sickle cell warrior and crusader of the same, given a chance to be the voice of those suffering from sickle cell anaemia, what would you prioritize?

  • Have the government make available medication for sickle cell patients.
  • subsidise sickle cell medications and treatments.
  • ensure sickle cell patients can access treatment anytime through the national scheme NHIF at a subsidised cost.
  • Health worker education on management of sickle cell.
  • society n institutional awareness on what SCD, what’s to be done n what not to be done to clear the myths surrounding sickle cell.

 What’s your word to those suffering from this disease and those who are almost giving up?

Sickle Cell is not some kind of prison or death sentence, it’s here with you yes but doesn’t mean it makes you less human.. love yourself, enjoy life to the max, take care of yourself n learn your body.

Find what’s best for you n focus on it.. do positive vibes only n never allow any negative thoughts cross your mind.

Engage in what you love best, learn your body and avoid triggers. Be your own doctor and put God first in all your doings.

Your last parting words to our ardent readers especially those with children suffering from sickle cell anaemia..

Sickle Cell is just but a disease, not some death sentence and every individual was born special with a special grace to handle whatever comes their way… so be it SCD or any other condition, God already knows you got it and he has provided that grace to manage it. Be positive, take life positively, love n care for all in all situations n let God take the lead.

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