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Marriage Is Beyond Love: Sickle Cell Survivors Tell What It’s Like Living With The Disease While Counselling Intending Couples
Motherhood In-Style Magazine

Motherhood In-Style Magazine

Marriage Is Beyond Love: Sickle Cell Survivors Tell What It’s Like Living With The Disease While Counselling Intending Couples

by
June 21, 2019

World Sickle Cell Day is usually observed on June 19 of every year. On this day, carriers of this pain-evoking disease use the opportunity to speak out and enlighten the general public about their experiences and struggles. Even more, advocates join hands to celebrate SS warriors and create awareness.

This year’s World Sickle Cell Day celebration has not been an exception. Several public walks and seminars have been organised to create awareness about the cause and prevention of sickle cell. Sickle cell warriors and survivors have shared their stories through so many channels.

One of the conduits that have been employed by SS warriors in the telling of their experiences is social media. On Twitter, several tweeps battling with the disease have shared heart-rending stories and also advised couples to know their Genotypes before getting married or having intercourse that may lead to pregnancy, adding that prevention is cheaper than treatment and better than cure.

READ ALSO: World Sickle Cell Day: Why It Is So Important To Learn About The Disease

Read their stories:

One Chrissy Nelle shared her journey:

”Today is and I want to share my journey with sickle cell. For the past 2 years, my health has been on a spiral. I have been in and out of the hospital every month due to pain crisis. I’ve had surgery and numerous amount of transfusions. I’ve been put on more medication than ever.

I’ve been hospitalized 10 times since 2017. I can’t even count the number of times I just went to the ER. With me being in pain and missing so many days of school. I made a decision to get home schooled my junior and senior year. I was in fear of not graduating on time and not accomplishing my dreams that I fell into deep depression.

Sickle cell not only impacts my physical state but also my mental and emotional state. Being in undescribable pain at any given moment takes a toll me. I’m unpredictable and it’s scary. I can be fine and well one day then the next, I can’t walk or move my body.

I have no control over my body but I have control over how I react to pain. Being stress only makes it worse, so I try to keep a steady mindset.

SEE ALSO: Nigerian State Assembly Bans Marriage Between Sickle Cell Carriers | Right or Wrong?

There are so many contributing factors to my crisis and pain. It could be from me out bowling, or crying & being stress. Or because I had the a/c on or because of my period. I don’t know the reasons, and I can’t try to fix my mistakes to avoid pain because it always happens.

Sickle cell is apart of who I am and it has made me strong. Everyone I meet and I tell them my story they ask,”How do you do it?” and I honestly don’t know. I have a strong independent mother that has taken care of me through everything. So I fight for her and my future.

I thought I wasn’t going graduate or if I did I wasn’t going reach my potential. But I literally did it all. I graduated with a 3.5 and I was shooked. I was able to do that despite everything because of my support system. All of the people on the hematology team, the nurses and my teachers they all made a way so I can do better and live my life.

Sickle cell is just as important and as serious as any other disease and it needs to be treated as so.”

A second warrior shared:

”My name is Mawedo. My genotype is SS. Do you know your genotype? Save your children the pain of living with sickle cell. Go get tested now!

Don’t let any Professor Hibishibi deceive you. There’s no known herbal cure for Sickle Cell Anemia o.

All the sickle cell warriors I know hate to be pitied (myself included). Show us empathy, not pity. We hate that! The fact that we sickle cell warriors sometimes aren’t able to do what others do easily doesn’t mean we are lazy. We just have sickle cell anemia. No warrior likes to be helpless.

SEE ALSO: True Life Story: Sickle Cell Mum, Anne Welsh Shares Personal Story to Encourage Pregnant Women Suffering from the Disorder

Sickle cell warriors are stronger than you think. It’s no wonder we are called warriors. We fight for our lives almost on a daily. We are not all fragile.”

Another warrior, Fatimo Oyawoye added:

Today is world sickle cell awareness day. Let’s break the sickle cycle. The sickle cell cycle ends with me. It’s a thread With everybody going on and on about first date questions. In all the list have seen so far one question is missing. What is your genotype?

Breaking of sickle cell cycle starts on your first date. AS/AS marriage is highly discourage same goes with AS /AC, AS/SS, AS/SC and more. Let us dilute the sickle cell gene let us encourage more AS/AA, AA/SS, AA/AC and AA/SC marriage.

What goes on in marriage goes beyond love at the end of the day it not just the love that keep you together. So while dating and falling in love let’s know our genotype.

The need to break the sickle cycle is not just about the individual it’s about everyone around them. Crisis is painful I won’t lie but seeing someone you love and cherish in so much pain that they can’t sleep and there little to do is much more painful.

ALSO SEE: Meet Alhaja Alakija, Nigerian Oldest Woman Living With Sickle Cell

I have spent weeks in the hospital because of sickle cell crisis, I have sleepless nights, Have missed classes because I was in the hospital and I have missed exams. The doctors try but they can’t do it all. Let’s discourage AS/AS and AS/AC marriage #breakthesicklecycle.

Sickle cell is real and this love we keep screaming won’t keep you together when the consequences come. If I were you the main first date question will be; what is your genotype? #knowyourgenotype.

Have watched my siblings, friends and parents cry and go through emotional stress because I am in pain. Let’s not put ourselves and our children in that position. Today I want the sickle cell story to end with me and that’s why I will raise my tiny voice high to break the cycle.

As serious as knowing our genotype is, its advisable to know your blood group too; you know O+, A+, B+, O-, A-, B-…complications might arise during birth when the child and the mother has different rhesus factor which is either +/- In short anything related to blood is vital!

A concerned man also shared: 

Less than 2 months ago, I lost my nephew Khalifa to SC disease, I have lost another in the past, he was named after my dad, countless other relatives & people around the world battling the crisis. The best way to curb this deadly scourge is to intensify awareness.

SEE ALSO: Defying All Odds to Become a Mom: Woman Living with Sickle Cell Tells Powerful Story

 

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