Haven.inc: SICKLE CELL: CHANGING PERCEPTIONS WITH ABIKE

Hello and welcome again to Haven Inc, hope you find it a place to stay. It's the month of September, a special month chosen to create worldwide awareness for Sickle Cell. Today's interview is with a Sickle Cell Warrior, Celebrity and friend.

Good day to you, Ms Kawther. Welcome to Haven Inc. Thanks for giving us the opportunity to speak with you. It is a great privilege. Can we get to know you?

My name is Oladehinde Kawthar Olamide. A 300-Level student of the Department of Human Kinetics, Sports and Health Education, Lagos State University.

Thanks for taking out time to be with us. It's Sickle Cell Awareness Month, and we would like this time it to better understand what this means. What is sickle cell?

Thank you. Sickle cell is a group of hereditary blood disorders that affect the red blood cells of a person living with the sickle cell disease.

Thank you. Can I ask what it's like to live with Sickle Cell? How does it affect you as a person, and how does it affect your interpersonal relationships?

First, I'll give thanks to God for keeping me till date (and beyond I pray). [Amen!] It's not easily living with sickle cell I must say; the pain, stigma and the resentment we get from people over something we have no control of (even from close relatives too). Sickle cell disease could lead to lots of debilitating complications, hence the reason we're being viewed as not whole and as weaklings. Majorly, people who suffer from the debilitating effects of sickle cell tend to have low self-esteem.

Wow! We've dealt with how society sees you. But how do you see yourself? And how does Sickle Cell affect the way you see the world?

I see myself as a complete imperfect individual just like anyone else. I am one who achieves anything I put my heart and strength to. Likewise, other sickle cell warriors, you hardly see a not-smart sickle cell warrior... We're just naturally blessed with lots of intelligence!! Sickle cell has nothing to do with the way I view the world. I mean, to any other person the world is filled with ups and downs, good and bad and so on. And that's just the way it is with me.

Pls permit me to be a bit blunt here. The fact that one lives with Sickle Cell carries a certain weight because of the projected life expectancy for Sickle Cell warriors. How does it feel to have such a cloud hanging over your head? Does it make you want to go out there and live to the fullest? Or does it make you a bit resentful?

To be honest, I think I'm caught up in the middle of these... Whenever I think of these two points, I have a rethink 'is it really worth it?' I mean, why do I have to think about what no one has control over? As a matter of fact our health is affected by our state of nind. So I'll say, live life as it comes, you don't have to over-do, afterall too much of everything is detrimental to the health.

Now, what's your message to the society? What would you have us know?

We can all help in creating awareness for this disease and we should all do our parts in preventing the birth of children with sickle cell disease.

1: Know your genotype (we can't emphasize enough on this!)

2: Laboratories giving out wrong reports should be prosecuted (only qualified labs should run the tests !)

3: Health care professionals should be well educated on how to take good care of people living with the disease.

4: People generally should also be educated about the disease so as to reduce the stigmatization we get.

5: We deserve all the love, care and support we can get (our mental health matters a lot too!)

6: We're not asking for people to sympathize with us (we don't want pity party), EMPATHY is all that matters!

7: Stop telling sickle cell warriors about the people you know with the disease who didn't live long (don't make us feel like we're dying).

Quickfire Session

Q1. Where can the government come in?

The government can help provide emergency centers for people living with the disease, where the rates could be subsidized or free

Q2. Message to lovers carrying the gene. Is love sufficient even after knowing the genotype?

In everything you do please remember to future, you dont want to birth children with the disease, trust me (it is extorting physically, emotionally, financially and mentally), the pain parents of sickle cell warriors feel cannot and should not be compared to the pain we warriors go through! It is only a selfish person that will sacrifice the life of their future children all for love, it's not worth it please 👏👏

Q3. Message to fellow warriors.

Y'all should remain strong, we're gonna scale through the pain, the hardship and difficulties. Believe in yourself and be the best version of you!

Q4. What can change?

The way people view the disease should change as well as the way people view those who live with the disease.

Q5. On bad days, are there triggers?

Yes, as I said earlier our state of mind affects our health status. A sad state of mind could easily trigger a crisis.

Q6. What can be done to help in case of any crisis?

Stay hydrated, stay warm and get help (preferably to a hospital).

Do not self medicate!!!

Lastly, do you have any support groups in case of anyone who wants to join or online resource sites where people can find more information about Sickle Cell.

Yea we've got WhatsApp group and Facebook group. The facebook group can be found with the name: "Sickle Cell Celebs."