Technology as an Indispensable Tool in Sickle Cell Advocacy.

ARREY- ECHI
Posted April 25, 2019 from Cameroon
Some Screenshots of me using WhatsApp Status to advocate for Sickle Cell.
Some Screenshots of me using WhatsApp Status to advocate for Sickle Cell. (1/1)

I was first introduced to the world of computers and emails  during my undergraduate days. Little did I know what profound effect this would have in my life years later. I have said these uncountable times and for those who have followed my journey with sickle cell advocacy, it is a recurrent theme. Yet, it remains a very vital aspect on the dawn of my advocacy journey which needs retelling again and again. I am more an observant person and my pen or should I say my keyboard is more vocal than my voice.Not being too vocal in speech would have made my advocacy journey a difficult one for sure even if I would have the opportunity to meet speech specialists and all that. That notwithstanding, since 2015, when I decided to start talking about sickle cell to change the misconceptions so many people have about sickle cell and hopefully change their perceptions, technology has proven to be a very necessary and indispensable tool I use.

With the use of Social Media and other online platforms such as Facebook, Twitter, Instagram, WorldPulse, Whatsapp Status updates, etc technology has proven to be the vocal cords I need to loud my message across the world for all to hear and of course, they are hearing it loud and clear. My clicks on my keyboard ring loud and just like a patched land greedily absorbs water, where my vocal cords have been inaudible, my words have served as the clarion call for us to educate ourselves on sickle celland thus, demystify it and the taboos surrounding it. I still remember vividly, the feelings I had when I was first notified about the first story award I got from World Pulse and its subsequent publication on Times.com. It was both exciting and humbling that my words on sickle cell would go that far while I sit quietly in my small unknown corner. It was all thanks to the power of technology.

Since then, I have gone ahead to continue my advocacy. I do 70% of my advocacy work online. For one reason, my health does not always enable the sometimes strenuous task of going to distant places with my message. With my online activities, I can reach more people with a single blog post. Granted, some who really need the information and may not have access to the internet would miss out. Yet, using technology has enabled me do something no matter how small, to help change the narrative on sickle cell. So many have through my posts and activities online, have been able to change their whole perceptions on people living with sickle cell.

I have been able to mentor people who are at a loss when they discover their child has sickle cell or some others with sickle cell facing numerous challenges. Most of these people, I do not know but thanks to technology, I can offer the much needed help and encouragement through one-on-one chats, from my own experiences living with sickle cell, online discussions on topics about sickle cell I raise and so forth.

Technology has helped me connect with like-minded people who are as passionate and committed to changing their own small corners of the world. A good example is being able to connect with amazing sisters from World Pulse across the globe who have also, turned out to be a strong support system in my journey. This couldn’t have been possible without my use of technology.

From being featured on BBC Africa’s #TalkItOut with my message on sickle cell reaching thousands of viewers across the world, to being a two time story awardee on World Pulse, to being a second runner up of the Sickle Cell 101 International advocate of the year 2018, to being a finalist of Health Unlocked Health Blogger of the Year award 2017, to being featured across numerous platforms,to being made a featured change maker and ambassador of WorldPulse, to being a winner of the Digital SummitSDG Goal 3 as someone who uses technology to encourage health and well being, it has been an amazing advocacy journey with technology which has equally impacted my life positively.

Technology continues to make my voice thunder. It continues to bring me dedicated and committed sisters and brothers. It continues to help my message on sickle cell access the nooks and places it would have otherwise been difficult to do with just my tiny voice. There is so much benefit which comes with technology and when used wisely, it becomes a very important tool in reaching our goals. It has certainly been so for me especially as the world gets smaller and smaller, thanks to digital citizenship.

This story was submitted in response to Girls in ICT Day.

Comments 15

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Jill Langhus
Apr 25
Apr 25

Hello Lovely Arrey,

How are you doing, dear? It's great to see your story and to realize how much ICT has positively impacted your life. How were you first introduced to it? I'm curious what your first thoughts and interaction were. I can remember the first, massive computer we used in high school. It was pretty crazy, with it's massive floppy disks.

I hope you're doing well, and that you're having a good day, and week!

ARREY- ECHI
Apr 25
Apr 25

Hello Sis Jill,
Good day. I am good, thank you just a little tight these days.
Thank you for the questions. I was first introduced to IT during my undergraduate studies. I remember being excited that I was able to now communicate with my sisters abroad easier through emails rather than waiting for letters by posts, some of which never got to me. After my undergraduate studies, I enrolled for an intensive computer course and still have my training book it date.

I also kept my floppy disks for long especially as it contained the soft copy of my undergraduate research paper. These days, I sometimes miss writing manually and the feelings of receiving a letter by post, but again, being introduced to computer all those years has indeed opened doors for me today.

My day is good, less busy today, thank you. Hope you are also having a great day.
Hugs and love.

Jill Langhus
Apr 25
Apr 25

Hello dear,

I'm glad that you're doing well. What do you mean by "tight?"

You're welcome:-) Very nice. Thanks for the additional information about your story:-)

My day is going well, thank you, dear.

XX

ARREY- ECHI
Apr 25
Apr 25

Hello Sis Jill,
Oops. "Tight" as in extremely busy ;). I sometimes write with direct translations of local parlance lol. Thank you. Hope the additional information answered your questions?

Happy to know you are doing well.
OXOX

Jill Langhus
Apr 25
Apr 25

Oh, okay. Ha. Thanks for the clarification. I hadn't heard that expression before.

Yes, it did. Thanks, dear!

ARREY- ECHI
Apr 25
Apr 25

Gracias.

Jill Langhus
Apr 26
Apr 26

De nada:-)

Raquel Daniel
Apr 26
Apr 26

This is profound!

ARREY- ECHI
Apr 26
Apr 26

Thank you, dear Raquel.

Lisbeth
Apr 27
Apr 27

Hi dear,
I agree even we all now do businesses on these social less talking about awareness raising.

I hope you are doing very great health wide? And thanks for sharing your story to inspire us
Kind regards

ARREY- ECHI
Apr 29
Apr 29

Dear SIs Salifu,
Thank you for reading through and for the kind words.
You are right, a lot is being done online these days.
I am doing great, thank you. I hope you are too.
Wish you a beautiful week ahead.

Anita Kiddu Muhanguzi

Hi Beautiful Arrey,
Thank you for your post. Its true thag technology can actually take you places whether physically or online. I am glad that it has helped you with advocacy on an issue that you are so passionate about.

Wishing you all the best in your endevours.
Have a great weekend my dear sister.
..

ARREY- ECHI
Apr 29
Apr 29

Dear Sis Anita,
Thank you very much for the kind words.
You are very correct, the importance of technology in advocacy cannot be overemphasized and it has indeed been a great help to me.

Wishing you the very best too.
Have a great week ahead,
Arrey

Hello, my beloved model sister Arrey,

You should also be awarded as Ms. Unstoppable for all the diligence you do in raising awareness on Sickle Cell. You are indeed a champion, and I am just so proud to be connected with you online. I could not be online as often as I wanted, but I am so impressed with the work you are doing, and even how you show the world how beautifully dressed a Sickle-Cell warrior can be. I keep rooting for more accolades for you, and I won't be surprised where this online campaign will lead you, You deserve all the blessings your received! Congratulations, my dear!

ARREY- ECHI
May 10
May 10

Awww what warm heartwarming words to read Sis Karen.
You have been a strong support this short time we bonded and it is equally an honour to be connected with you in these spaces.

Thank you very much. Yes of course, we can be super well dressed models with sickle cell too lol. Absolutely no time for pity parties.

May all your wishes come true and may more mindsets and perceptions be changed with this online efforts to bring awareness to sickle cell.

Hugs and love always,