The Sickle Cell Hurt

Suzan
Posted June 19, 2020 from Nigeria
A woman hurting but hopeful...

So, it’s another year to remember those who are anemic, the Sickle Cell group. Some would call it a blood disease but for me, you are just different and NO, it’s not a death sentence but a condition one must find ways to deal with especially now as the pandemic has placed them as vulnerable individuals.

https://www.von.gov.ng/video-world-sickle-cell-day-organisations-call-fo...

This year, I took a moment to reflect on the friends I’ve lost to this dreadful stigma. My Sunday school teacher, Brother Isaiah was the coolest, most respectful person I ever knew in my tender years. It’s been over 20 years since he passed but he made an impression on me that has lasted till this very day.

Gloria Adejoh, My high school classmate and the sweetest girl. She was classy, fun-loving and had so many aspirations even though we were young and didn’t know where we would be heading, she seemed to have it all figured out.

We almost share birthdays and a love for poetry and art. What hurt the most, she got selected to study her dream course; French, but she didn’t live to fulfill it. I wept, it hurt. About 15 years down the line, but I remember her every June and at a time like this.

The list is never-ending. There are women who have been denied the chance to have children or be with their true love because; sickle cell keeps rearing its ugly head reminding them of their limitations.

We need to find a common ground to support all those affected by this hurtful outcome. Awareness isn’t the only way out. As sisters, we should always speak to one another about the importance of getting tested. Tell each other the truth about what happens when you ignore the obvious.

It isn’t just about you but the future after you and the generations of feeble youths you will be breeding if you don’t take a stand. As I said, it hurts but it’s not a death sentence. Your voice is the channel for hope today.

Comments 15

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Chi8629
Jun 19
Jun 19

Thank you for sharing.

Suzan
Jun 19
Jun 19

Thanks for reading.

Chi8629
Jun 19
Jun 19

You are welcome beautiful sister.

Hello, Susan,

What a lovely tribute to Sickle Cell Warriors. My tears fell as I read about the people you loved who succumbed to this disease. The photo you uploaded and the caption on it speaks volume. It is truly sad, dear. Yes, it hurts, too. And it is OK to weep.

I learned on one TEDTalk that we do not move on from grief, we move along in life with it. Thank you for raising your voice on this issue, dear. Our World Pulse Sister Arrey Echi is calling on everyone to wear black and red today in solidarity of breaking the silence on sickle cell. I uploaded a photo of mine on Facebook and LinkedIn to show support and spread awareness. May this campaign save more lives.

Thank you for sharing! Please stay safe. :)

Suzan
Jun 19
Jun 19

Hi Karen, thanks for reading and appreciating my little effort to keep the sisterhood positive in the face of this. Truly grief is a part of life but it's a growing process, not a breaking point. I believe our voices will make all the difference.

Your welcome, love. Ohh, but writing about it and sharing your vulnerability is not a "little effort", dear. That's huge! So kudos to you. Keep raising your voice, sister. Because those without any need you to speak for them. Hugs!

Suzan
Jun 19
Jun 19

Thanks so much. I will definitely keep the flag flying. Hugs

ARREY- ECHI
Jul 15
Jul 15

Oh Sis Karen,
Thank you so.much for taking this one step further to LinkedIn. I really have to learn to get the hang of that platform.

Much love always.

Thelma obani 2020
Jun 22
Jun 22

Your picture speaks volume and your write up too.
Thanks for sharing

Suzan
Jun 22
Jun 22

Thanks so much for reading. Appreciate it.

Sinyuy Geraldine
Jun 24
Jun 24

Dear Suzan, Sickle Cell anemia is a terrible health condition and it truly deprives many people from pursuing their goals. I am so sorry that you lost your friend to this disease. Take courage. We pray for those who have this anemia to find hope and comfort.

Suzan
Jun 24
Jun 24

Amen. Thanks so much for your kind words and for reading this. There is always hope in the face of hurt.

ARREY- ECHI
Jul 14
Jul 14

Hello Susan,
Should I.say welcome to the Pulse?

It is good to have you here.
Thank you so much for raising your voice and adding it to the thousand others raising their voices on sickle cell awareness.

I am sorry about the friends you lost.

I wonder if you are also a warrior?

Sometimes I feel the choices of words we use do make or mar the stigma directed to persons living with sickle cell. The use of negative strong words feed into the stigma and discrimination people with SS face daily.

I am not saying we ignore the challenges and trials that come with living with sickle cell. But we can do so in a way that makes others see that there's more to sickle cell than pain and suffering.

Maybe I am generally an optimistic person but I have come to understand through my advocacy that a balanced view of our challenges and victories does a lot in making people aware enough to change their perception about sickle cell.

Yes, to knowing your genotype and making informed choices. And No, to stigma. Sickle cell is a genetic blood disorder not a death sentence or a dreaded curse. With good care and management and enough sensitization, life with sickle cell is very livable to the fullest.

Keep writing and speaking.
With love from Cameroon.

Suzan
Jul 15
Jul 15

Thank you so much Arrey for speaking on this. This is exactly the attitude we need to overcome the stigma. Positive and informative vibes to keep people with the disease optimistic and conscious. Thanks again for your openness.

ARREY- ECHI
Jul 15
Jul 15

Dear Suzan,
Thank you too. I appreciate you and your voice. Keep speaking.
Together, our impact is greater.

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