Campaign Update

Four Seasons of Colour Awareness and Pilot Free Screening for Sickle Cell Anemia to Celebrate World Sickle Cell Day, 2019.

ARREY- ECHI
Posted July 26, 2019 from Cameroon
Some pictures of those who came out with shades of red/black for sickle cell
Some pictures of those who came out with shades of red/black for sickle cell (1/6)

In June 2016, shortly after completing my Voices of the Future training on World Pulse, I organized my first Sickle Cell Workshop on Sickle Cell Care and Management. Getting timidly into unchartered territory, I set my target at 20 persons. How thrilling it was to get more than 60 persons attend that maiden workshop. Furthermore, not being used to using digital technology to promote my cause, I also carefully trudged into the first online colour awareness campaign for sickle cell. I did it for a week only. The support and positive feedback I got from these two events set the pace for something which has now become a month long activity every June, raising awareness and changing the narrative on sickle cell as the world commemorates World Sickle Cell Day every June 19th, a day that was set aside not to celebrate pain, but to raise awareness on a genetic blood disorder filled with so much misconceptions and taboo.  

With lessons from these maiden events and good investment and preparation, the online colour awareness campaign has become one of the most vital and useful tools I am using to further my cause to #BreakTheSilence and #BeASickleCellVoice. And as the years go, more and more people are adding their voices, joining me to break the silence, becoming sickle cell voices. The feedbacks I have received over the years from people who tell me how my efforts have completely changed their perceptions about people living with sickle cell have continued to be a great moral boost.  

For any who has been following the campaign, I am sure they could see how much of life and fashion I love and despite the challenges faced with living with sickle cell, I try to infuse that into my campaigns. Where many erroneously believe people with sickle cell must usually always look sad, disorderly and unkempt, infusing my positive outlook into my campaigns and my love for simple, elegant dresses has completely changed the game in this regard.

This 2019 campaign saw me doing it in the fourth consecutive year. It has been just as challenging as it has been fun. And with each passing year, I am encouraged by the support and feedback to keep it going as best as I can for as long as I have the stamina and means. 

This year was special in many ways. I usually organize workshops where we raise and discuss issues people in the sickle cell community face and try to look for possible ways forward. However, this year, I decided to dare it and go out of the comfort of the workshop zones and try something bigger. After mulling the idea for some months and finally discussing it with Dr Budzi, the young dynamic doctor I have been privileged to work with for some time now and a few trusted friends, I or rather, we decided to take a leap of faith and try the idea… offer a free screening for sickle cell targeting at most 100 persons.  

I agree, the available cash I had was enough to organize another workshop but not enough for a project of such magnitude. Yet, we planned and as June approached, took a great leap of faith and posted on Facebook, making an appeal for support.  Friends have generously supported my activities all these years. However, this was the first time I openly appealed for support and I must admit, I had my fears and worries on how the reactions would be. The support that came through was amazing, far beyond my wildest expectations.  It was both humbling, overwhelming and all I could say was I indeed have an amazing TRIBE of people behind me, who have been following my activities and would readily come in to see me soar. It was heartwarming.    

As June 15th, the day selected for the screening approached, we had a new worry… if we would be able to screen all who showed up. You see, the flyer was shared multiple times around Facebook, other platforms, given to outpatients at the Etougebe Baptist Hospital, Yaounde etc, giving the free screening great publicity. We had to also use tact to be sure we screened only those we knew had no idea of their genotype. In all, we had about 150 persons present and in trying to avoid known sickle cell warriors present, we successfully screened about 85+ persons. We had both print media, private camera and TV stations present for the event.

While we were busy preparing for the free screening, the online colour awareness campaign was gathering steam.  I with the help of some friends, came up with ideas on how to make it both fun and educative. This is how we came up with a few hashtags … #RedLipsForSickleCell, #BrightLipsForSickleCell, #RedTiesForSickleCell ( this had the men in mind so that they should not be left out) and people were encouraged to #DareItForSickleCell. Too many hashtags, everyone selected what appealed to them and the game was on. It was truly fun and the turnout was just as amazing. I would love to appreciate everyone on the World Pulse community who joined their collective voices in one way or another to make this a success. While I could count the number of people who attended the free screening to about 150 persons, it goes without saying that using technology (WhatsApp Status, Facebook, Instagram, appearing on TV to talk sickle cell and the screening event being shown by two TV stations, print media etc,) the campaign this year reached more people than I count.  

 I didn’t bag on falling sick but unfortunately, I found myself in the hospital after a successful June 19th campaign where my Tribe came out en masse to help paint social media red/black for sickle cell. This was like some kind of incorporating theory and practice in this year’s campaign.  To crown matters, while at the hospital, I got notified that I have emerged winner of Sickle Cell 101 (SCAY19) International Advocate of the year. In all, the media coverage, the award, the hospital stay and above all, the overwhelming support received made this year’s campaign a great success and I am so looking forward to #BreakTheSilence campaign season 5.

Four impactful seasons gone, more seasons to follow until the silence is broken and the voices grow louder.

#BreakTheSilence #BeASickleCellVoice

How many people have you impacted since your last update?

150

Comments 16

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Jul 26
Jul 26
This comment has been removed by the commenter or a moderator.
Moh
Jul 26
Jul 26

This campaign is very important because health issue is the main challenge we are facing in our community.

ARREY- ECHI
Jul 26
Jul 26

Thank you very much, dear Moh for reading.
Yes, you are right. The campaign around health issues is very important because most of our people lack basic knowledge on many health situations like this.

Jill Langhus
Jul 27
Jul 27

Dear Arrey,

You truly are one amazing, trailblazing sister... You're such an inspiration to me, as well as so many others. Please keep up the good work, spreading even more awareness and helping to inspire others who have this disease, too.

Hope you have a great, rest of the weekend, dear!

XX

ARREY- ECHI
Jul 29
Jul 29

Dear Sis Jill,
Thank you so much for reading through and for the every thought words of encouragement you leave. It means alot. Glad you were able to make some sense from this paragraph lump. It has been quiet frustrating trying to edit and put some order into the structure.

And thank you, I sure will keep it going. Weekend was great, thank you.
Wish you a beautiful new week
Love and hugs

Jill Langhus
Jul 29
Jul 29

Hello dear:-)

You're very welcome. I'm glad to help:-)

It looks like the format has been fixed now...yay! Did you manage to figure out a fix or did IT fix the bug?

Great to hear you had a great weekend. Thanks on the well, week wishes. You, too!

XX

ARREY- ECHI
Jul 29
Jul 29

Thank you sis Jill,
Actually decided to try my phone after several more attempts this morning from the laptop and the phone kind of did the trick :)

It is always try and try until you get it lol.

Hugs

Jill Langhus
Jul 29
Jul 29

You're welcome, dear:-)

Oh, I see. Sorry you had so many challenges with it:( Hopefully it will be fixed next time you go to post a story. Please keep me posted... no pun intended...ha:-)

ARREY- ECHI
Jul 29
Jul 29

LOL @ no pun indeed.
Will do, thank you. Hopefully so too. It would sure be helpful for many of us experiencing such.

Jill Langhus
Jul 29
Jul 29

Tee-hee:-) I was all proud of myself with that one!

You're welcome. Yes, it would. Thanks for bringing the issue up and reporting it:-)

Urmila Chanam
Jul 29
Jul 29

Dear sister Arrey Chi,
I am deeply moved to witness Break the Silence on Sickle Cell Anemia Campaign through the years led by you. Only few take the courage to overcome their own situation and think a step further to think about others and the challenges they face daily living with it. And you have done that so well, my sister. I pray to god to give you strength, help and support for the important work you are doing.
Much love and hugs,
Urmila Chanam,
India

ARREY- ECHI
Jul 29
Jul 29

Dear Sis Urmi,
Thank you very much for the kind words. It has been a challenging but equally fulfilling years with the breaking the silence on sickle cell anemia campaign. Each time I feel discouraged, I am reminded again as to why I started this and the sure support of many dear ones behind me. Thank you for the love and prayers. May they all come to pass.

Much love and respect always,

Hello, our dear Sickle Cell Warrior Princess!

With my heart’s sincerity, I want to commend you and congratulate you for all the efforts, preparation and yes, the recognition! I am SO proud of you.

It’s encouraging to know that you began in 2016. I’m curious about that Voice of the Future training. I’m glad it trained you to go outside your comfort zone and create impact to your community. Your journey is personally inspiring for me because I am still at the starting point, where you were at on 2016. I hope four years from now, I can follow your footsteps as well in impacting change in my community.

Your campaign was so effective that I had to join it and participate in raising awareness. I’m happy to see myself on your collage. Haha. I’m really quite shy, but I had to stand with you on this campaign.

Thank you for your courage, sis Arrey! I did enjoy your showcase of dresses during the campaign. I’m still hoping someone gets you as a model for real. I love you, sis! Hugs!

ARREY- ECHI
Aug 02
Aug 02

My dear Sis Karen,
Thank you so, so much for the kind words of encouragement always.
The Voices of the Future training was a six weeks online training organized by WorldPulse. I think today, it is the Digital Change Maker Program. It is one program which provides life long skills in digital technology in our world today and a beautiful sisterhood. It really pushed me beyond my comfort zone.

I am glad you find my journey inspiring. It warms the heart to see many more doing great things to positively impact their communities and you are one very loving and brave impact maker. I am glad you are on that journey already and I believe you will do great and amazing things four years from know. Once we start, we get motivated to keep going and that is the most important thing, passion and motivation.

It was truly heartwarming to see you join all the way from the Philippines, despite your being shy. Believe me, it made others to join too. Thank you once again and yes, it always warms the heart and brings a smile to my face, seeing you amongst the collage of pictures.

Aww thank you. Yes, oh! We need that modeling contract! Thank you dear sis.
Love you too,
Hugs from Chilly Yaounde today.

My pleasure, sister Arrey! Awww. You are so eloquent in writing. Thank you for your kind words. I'm so happy we got connected on World Pulse. You're always a source of inspiration.

Hugs from a rainy Cebu!

ARREY- ECHI
Aug 21
Aug 21

Lots of love and sunshine your way dear sis. It is a great pleasure and privilege to connect with you here.

Lots of hugs.