Here is Arrey-Echi’s concluding story. Living with sickle cell is challenging in many ways. It can cause havoc to the organs. Apart from losing my hearing at a young age, I think one of the most daunting challenges of living with sickle cell is dealing with recurrent leg ulcers. Let me just say, this is one challenge that is emotionally, physically, mentally and economically tasking. It is not something I would wish on anyone and for those who are undergoing this, I say courage and hang in there. Though my leg has been okay for some years now; I used to look at my leg and the scar and just hated that part of my body. I used to feel ashamed exposing that particular area of my body. However, when I started looking at the scar in a different light, my perception changed and I started liking my body again despite the scars and all. My scar is my trophy. It is a reminder of the many times I have gone through the fire and hospital weapons and come out successfully. Like a soldier running from the battlefield, I wear it with pride. I can say I have been fortunate to not have many complications apart from the ones mentioned above and I can only pray as long as I live, I don’t have to deal with more complications.
I have been doing sickle cell advocacy since 2015. In one of my Facebook posts in a group I am part of, I spoke about stigma using sickle cell as an example. The comments from that post were something I still marvel at till date. The ignorance and misconceptions was so much that I decided to start speaking out. It was not easy to go out there and talk. Still, I felt this strong urge to start talking using my experience with sickle cell disease as a base. I started blogging about my experience with sickle cell. My blog Joy2Endure (www.joy2endure.com), I was told I had an unusual name for a blog. However, it is the summary of my life in three simple words. It tells a story, a story I believe many would identify with and from this name, the name of my organisation, Joy2Endure Foundation was born.
From writing, I started organising workshops and outreach programmes to educate, empower and demystify sickle cell. I write throughout the year on my blog and Facebook pages (arreyechi FB name, Joy2Endure FB page). June is the busiest month for me. I launched a yearly online colour awareness campaign ‘Break The Silence… Be A Sickle Cell Voice’, in 2016, which I carry out every June in lieu of World Sickle Cell Day. Basically, I wear red/black/white all the shades of sickle cell disease throughout the month of June. I take pictures of myself and upload online and encourage others to join me wearing the colours for sickle cell. It is more than just dressing up and posting pictures. It has been an effective tool to raise awareness and change the perception of many people against those living with sickle cell. With each picture, I write something about sickle cell. However, the feedback I get and the number of people who join me yearly to wear red especially on World Sickle Cell Day keep growing. It is a testament that this mode of awareness is effective in breaking the silence and stigma around sickle cell.
Out of social media platforms, we organise workshops; free genotype screening, I mentor other warriors, encourage them to own their stories and speak out and not be ashamed of their status. For example, during this period of COVID-19 lockdown, we were able to reach over 500 warriors between June and July in four different towns within Cameroon with facemasks, hand sanitisers to help them fight COVID-19. Additionally, over 100 warriors benefited from routine medical drugs for warriors.
Also, around October 2020, we distributed routine drugs to an additional 100 warriors within two support groups for warriors in Yaounde. At the beginning, it was mostly small programmes I could afford. As the years progress, we have been able to increase our outreach to such numbers and towns because of the generous support of many amazing individuals following my work and wishing to make life a little easier for warriors. So they join in kind and cash and they help me to keep going.
When I decided to start talking, I didn’t know how things could turn out. I just wanted to talk because I know that if we do not tell our stories, many will continue to twist the narrative based on misconceptions and the stigma and discrimination would not go away. One mindset change at a time and some awards and features later, it is both exciting and fulfilling, using one’s pain and turning it into purpose to help others find joy while enduring. I am just so happy to see these little changes taking place in my small corner and my hope is that I would be able to leave a solid foundation others could gladly continue building on.
To those living with sickle cell who may be dealing with a lot, facing challenges and feeling sorry for themselves, I say chin up! Feeling sorry will not make your situation change or go away. Of course, it is okay to cry. It is okay to feel frustrated and discouraged. Life threw us bitter lemons, however, we can choose to stay with the bitter lemons or we can decide to turn them into sweet, beautiful, tasteful lemonades and even throw some creativity in the mix. It is really up to us. Sickle cell can be the sum total of our lives only if we make it the centre of attention. Accept your life. Accept the challenges. Learn to take better care of yourself, take things one day at a time as they come. Appreciate your life, your support system. Do what you can to stay happy and healthy and let God do the rest
We are born with sickle cell and we will die with it. However, it may not always be what kills us. Once we accept this, it becomes easier for us to lead a normal, fulfilling life. Medicine and quality of life with sickle cell disease continue to improve. Our overall attitude, while we move along with medical breakthroughs, is equally as important. Chronic negativity and bitterness will only bring gloom and cheat you out of a beautiful life however short or long it may be. Positivity despite the many challenges rejuvenates us to soldier on like the warriors that we are. See the possibilities. Choose positivity. Choose Gratitude. Choose faith and above all, choose to LIVE!
If you would like to comment about this column or sickle cell, please contact me on: firstname.lastname@example.org and do visit my blog – www.howtolivewithsicklecell.co.uk
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