TRGB Media: Tell us about yourself a little more
Jenica Leah: My name is Jenica Leah and I am a 29-year-old from the UK living with sickle cell SS. Referred to as one of the UK’s leading ambassadors for sickle cell, I share my journey via my blogs Me Myself & sickle cell on my blogsite and on YouTube.. I am also a publisher and the award-winning author of the first children’s book series about sickle cell entitled My Friend Jen which was released in 2016.
TRGB: When did you first learned that you were diagnosed with Sickle Cell?
Jenica Leah: I was diagnosed from birth. My parents both knew they had the trait and knew there was a chance I would have sickle cell. They got the positive results 6 weeks after I was tested at birth.
TRGB: How is your whole experience living with the disease? What symptoms do you suffer the most from?
Jenica Leah: My experience living with sickle cell now is manageable, however it has taken me years of complications and learning to understand my body to get to this point. I would say the symptoms I have suffered from the most aside from bad pain crisis is all the unknown complications that can come with sickle cell as I feel like I have had almost all of them. I always used to have pneumonia as baby and toddler and spent a lot of time in hospital; my first crisis I was around 9 months old. I had a stroke at 14, acute chest syndrome at 16 which very nearly took my life, gall stones throughout my teenage years which lead to me eventually having my gall bladder removed at 24. I was diagnosed with Avascular necrosis in both hips and I had a total hip replacement in my left hip when I was 25 as a result. I have also had multiple blood clots, and liver cholestasis. All complications caused as a result of my sickle cell and the way it has affected my body.
TRGB: Was becoming an author something, you always wanted to do? What was the journey like?
Jenica Leah: I have always loved writing as it is my outlet for certain things. I always find writing about good days allow me to remember how I was feeling and enjoy the moment longer, and writing about bad days or tough times allows me to get it out of my system so I can let it go and not harbor negative emotions. Becoming an author was not something I had planned to do at all but the moment I decided to turn what I had written into a book I was motivated to get it done; nothing and no one was going to stop me. The journey was fun although I encountered a lot of bumps in the road which I had to find a way over in terms of getting my book published.
TRGB: What was the inspiration behind your book “My Friend Jen?”
Jenica Leah: The inspiration behind my book was to be able to give something to children who are growing up living with sickle cell today that would provide them with peace of mind about their condition and also let them know that having sickle cell should not stop them from achieving their dreams — no matter what they are. Growing up I despised the fact that I had sickle cell and always used to ignore it or try and hide it; mainly because I didn’t understand what it was so it was difficult to explain that to others. With the first My Friend Jen Book it’s a simple way to explain what sickle cell is and the basics of how someone living with it can stay well.
TRGB: I see on your IG page that you have a lot of supporters with your book and movement. How is the marketing going for your book?
Jenica Leah: When I initially published and released my book I honestly didn’t have a marketing plan. I just released it and went with the flow but the feedback and amount of support I had was unbelievable and that’s when I realized that I had created something so beautiful and so beneficial, especially for children who had sickle cell and children with parents who have sickle cell. By that point my book was more less marketing itself, I believe because it is the only one of its kind at the moment.
TRGB: Since the book release, what type of events has the book participated in?
Jenica Leah: Since the books release It has been nominated for and won awards, been highlighted by news outlets, book stores and in particular has had a major impact in health conferences and pharmaceutical research. I also launched something called My Friend Jen Projects to be able to host my own events for the book which would help those in other communities around the world who may not be able to have access to the book otherwise. The book donation projects have been a huge success so far with regular sponsors and encouragement for it to continue.
TRGB: When does the sequel to the first book come out? Is it the same concept from the first book?
Jenica Leah: The sequel will be released within the next several weeks and is now available to pre-order at a reduced price. My Friend Jen was always intended to be a series of books that follows Jen on her journey growing up with sickle cell so the concept is somewhat the same and readers can learn more about sickle cell and the things Jen goes through.
TRGB: Are you currently working on any new projects?
Jenica Leah: The next major project we have will be the Jamaica book donation project which will take place between January and March 2019. So far, we have done book donation projects in Gambia and Nigeria so we are really looking forward to Jamaica being the 3rd book donation project.
TRGB: How has becoming an author made you a better person?
Jenica Leah: Becoming an author has made me appreciate writers a lot more as I know the depths one has to go through to be able to produce a book that makes a difference. More than anything though, I would say that becoming an author has made me humble and motivated to continue to advocate for sickle cell as I can see how my children’s book and even my blog, has helped people to become more confident in sharing their journeys with sickle cell also.
TRGB: How can readers connect with you?
Jenica Leah: Readers can connect with me via @myfriendjenbooks on Facebook, Instagram and Twitter. They can also keep up to date with everything I have going on including new My Friend Jen releases and updates, projects and events by subscribing to the Me Myself & Sickle Cell blog site: http://www.jenicaleah.wordpress.com
TRGB: As an advocate of SCD, what types of projects or events do you participate in to bring more awareness in the communities?
Jenica Leah: I try and get involved in as much events in the community as I can whether it’s fundraising events, motivational events or even fun days for children; there is always space to highlight sickle cell. I have also arranged blood donation days to encourage more blood donors and been involved in youth and school projects too.