Saturday, September 28, 2019

Sickle Cell Awareness | Jenica's Story & 'My Friend Jen'

Sourced from inews.co.uk 
Our series on sickle cell awareness continues. Honestly, I couldn't be more grateful to the women who have willingly opened up their lives for us in the name of raising awareness. Last time, we caught up with Betty, who shared intimate and moving details of what it's like to be the mother to three year old Jessica, who has sickle cell.

In her interview, Betty shared that one of the ways she has educated Jessica about her condition is through a book she requested from her local library - My Friend Jen.

My Friend Jen, by Jenica Leah is a children's book whose main character, 'Jen', is a sickle cell survivor, just like Jenica. By describing Jen's day to day activities, Jenica hopes to empower other children with the condition, whilst normalising it and educating their friends and family about the condition. 

We catch up with Jenica to find out more about My Friend Jen.



In Conversation with Jenica

Firstly Jenica, many thanks for agreeing to take part in this project. Can you please tell us your motivations for writing My Friend Jen?
I wanted to give young children growing up with sickle cell peace of mind that I didn’t have. There wasn't much available to explain to me what sickle cell was and what this meant for me. It was all very negative and made me perceive my condition as something not to be proud of.



What is My Friend Jen about?
My Friend Jen is a series of fun and informative children's books about sickle cell. The first book in the series explains what sickle cell is and offers a few simple tips on how to stay well with the condition. 

Who is My Friend Jen targeted at?
The book is targeted at all children; not just those who have sickle cell. Sickle cell is actually one of the most common genetic disorders in the world and so it is important that everyone has an understanding of what it is and how it can affect those that live with it.

What challenges did you encounter whilst writing My Fried Jen?
One of the main challenges when writing the book was being able to take medical information which could be uninteresting and somewhat advanced for the target age group, and create a fun yet informative story out of that also rhymed!


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What has been the best part about producing and promoting this book so far?
The impact that it has had internationally. Since I struggled to find a publisher and decided to self-publish instead, I honestly never imagined that My Friend Jen would have the reach that it has had across the world. I have visited Nigeria and Gambia as a result of it and also been contacted by organisations and haematologists from places such as Antigua, Jamaica and the USA.T

What is sickle cell?
In short: Sickle cell is a genetic condition that affects the haemoglobin in the red blood cells. Haemoglobin is the protein in red blood cells that is responsible for carrying oxygen around the body and as people who have sickle cell have abnormal haemoglobin, the shape and quality of our red blood cells are affected. Instead of being round and spongy they become an unusual sickled or ‘c’ shape and are sticky which makes them sometimes clump together. When this happens it blocks the blood flow in veins and arteries anywhere around the body causing excruciatingly painful episodes known as a ‘sickle crisis’ and can also cause other serious complications such as chronic pain, organ damage, stroke and in severe cases, death.


What is the most important thing you'd like people to know about sickle cell — especially those unfamiliar with the condition?
The most important thing I would like people to know about sickle cell is that it is —for the most part— an invisible condition and the pain and complications caused by sickle cell can occur at any time. We have to learn to manage our pain on a daily basis and so often won’t look like we are in pain; but we are. Just to put this into perspective I have walked into work in the morning and been rushed to A & E in an ambulance just a couple hours later because of a sickle cell crisis. So don’t judge someone with sickle cell by the way they look.

How has living with sickle cell affected your life?
If you Google the complications related to sickle cell, there are only two, possibly three that I haven’t been affected by. I missed time off school, time out of college, and have in the past discharged myself from hospital as that seemed like a better option than being the annoying co-worker that made others have to work overtime because I was sick again. Sickle cell has even been the reason guys have broken up with me and I have broken up with them. Despite all this however sickle cell has taught me how to be strong, how to see the good in what seems like a bad situation and how to make the most out of life.

Who are some of your favorite authors?
Jaqueline Wilson, Malorie Blackman, Anthony Browder and Iyanla Vanzant. All very different genres but their books were significant at different stages of my journey and helped me get through some difficult times.

What advice do you have for aspiring authors? 
Just write, don’t over think it. And also, to believe in yourself and what you are writing even if no one else does. You can’t expect people to understand your journey when they don’t have your vision.

What's next for you as a writer and sickle cell activist?
I feel like I have been saying this since the release of the first book, but more books in the series of My Friend Jen will definitely be coming soon. And I will continue to write and speak about sickle cell; sharing my journey and experiences for those who can relate and sharing patients' perspective on a condition that is still not fully understood.

Where can we purchase My Friend Jen?
myfriendjen.co.uk, JLG Publishing and on Amazon


Thank you Jenica!

Another amazing interview with another inspiring woman. Please share your thoughts below, and share this post on socials, with the hashtag #sicklecellawareness. To know more about Jenica's story, visit her blog, memyselfandsicklecell.com, or follow her on FacebookTwitterInstagram or LinkedIn.


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