Pain is something everyone dreads. But for people with sickle cell anemia, chronic pain is a hostile companion they must deal with for long periods of time. Simply put, the pain they feel is unimaginable! So, imagine going to bed feeling ok. But at daybreak, you are bugged down by acute body pain that won’t go away. That has been the story of Arrey-Echi Agbor Ndakaw, the tender kid who was diagnosed with sickle cell anemia aged 2. Life became a roller coaster of sorts growing up with numerous hospitals stays from inconceivable pain episodes which are commonly referred to as sickle cell crisis.
“These pain episodes could last for a few hours to even months. Somewhere along this journey, I lost my hearing which also greatly impacted my speech.” Arrey’s challenges were many. The included huge financial and emotional costs. And for years, she had to deal with repeated recurrence of an ulcer at her left ankle for years.
As you would imagine, Arrey has had her own fair share of dealing with stigma and discrimination associated with sickle cell. Yet, “In spite of these challenges, I was able to rise above that to be who I am today” she asserts.
She is grateful to her family and friends. “They have walked this journey with me from the word go, being my biggest cheerleaders despite the ups and downs of life and human imperfections. Their love and support instilled the confidence I needed to face this battle.
They have been there, and I couldn’t trade that for anything. I am equally thankful for the amazing friends who have also been there, cheering me on.”
TURNING POINT
The year 2015 is very significant in Arrey’s life of living with sickle cell. One day, she posted a social media comment on sickle cell.
Instantly, it became the kick-start button of her advocacy.
“I began blogging about my experiences living with sickle cell on my blog www.joy2endure.com”.
Shortly after, in 2016, after going through the Voices of the Future online class organised by WorldPulse, an online platform dedicated to empowering and amplifying women’s voices, Arrey’s sickle cell advocacy entered a new phase. The#BreakTheSilence…BeASickleCellVoice” movement was launched.
“Those living with sickle cell were encouraged to speak out and not suffer in silence.
It has been a privilege to see more and more people gradually joining the movement to raise awareness and support for sickle cell”, Arrey says.
What began as a passion and strong desire to speak out and help change the narrative and misconceptions around sickle cell has seen Arrey win awards and recognitions. Her blog was a finalist for the 2017 Health Unlocked Health Bloggers Award, she has been a two time World Pulse Story Awardee, 2018 runner up Sickle Cell 101 International Advocate of the year, 2019 winner of Sickle Cell 101 International Advocate of the year and most recently, winner of the First Ever World Pulse Spirit Award Encourager category.
She has also won the Digital Citizen Award for SDG 3 using Social Media and Technology to promote health and wellbeing
ARREY’S WISE WORDS
“I decided to turn my pain into purpose and my challenges have become my saving grace. Life does deal us blows. How we decide to face these blows is up to us.
Attitude is everything. And yes, there’s always a reason to be joyful while enduring.”
ARREY’S SWEETNESS
“I am a foodie to the core. I find cooking fun and soothing. I also enjoy creative writing (inspired more by watching people and situations around me), reading, traveling and playing indoor games like scrabble.
I cannot really say I have lost friends. Growing up and life happened, and we drifted, I think. On the most, almost all my friends have been super supportive and encouraging.”
“Each day I wake up pain free is a joyful moment. Spending time with family are beautiful happy moments. But yes, milestones have come with their own doses of joy and seeing how the advocacy journey is helping change mindsets about people
living with sickle cell is a great cause for joy.”
What turns off Arrey?
“I hate dishonesty, manipulation and exploitation.”
Superstition:
“People attribute SS to witchcraft and because of this ignorance and misconceptions, those who have it are made to feel like a curse. Some even go as far as refusing their child or relation to marry someone with SS because they claim we will die and leave their relation would be left stranded as a young Widow/ Widower. Derogatory words like Half Die, Obanje (mermaid) etc. are used to refer to us. Sometimes, some are forced to hide their SS status to be able to pick up a job. The lack of education and adequate sensitization has contributed largely to this unfortunately beliefs.”
SPEAKING UP
“We are trying to break the silence and stigma through education and sensitization campaigns. The aim is to help people understand that sickle cell is a genetic blood disorder and not witchcraft. One common belief is that people with sickle cell do not live pass 21. This is a fat myth.
“With just a little more care, love and support, people living with sickle cell can overcome these challenges, live healthy productive lives and be productive members of the community. We are also encouraging people to know their genotype before they enter the dating game and start thinking about their commitment in order to be able to make informed decisions in life.”
Thank you the Voice for finding my story a worthy one to be amongst the women of our time.
We remain motivated and encouraged to keep up the work of speaking out and educating people on what sickle cell disorder is all about.