Patient Leader Spotlight: Jenica Leah
This Sickle Cell Awareness Month, we're taking the opportunity to shine a light on some of our community's most influential change makers. This week, we're featuring sickle cell advocate and author, Jenica Leah. Learn about her advocacy journey below!
What made you want to write a book about sickle cell? What impact do you hope your book will have?
When I was growing up, I didn’t really understand sickle cell disease (SCD) and found it difficult to explain to others what it was and how it affected me. This lead to me feeling quite isolated as a child. I wanted to change this for children growing up with sickle cell today. So, I created something I wish was available to me as a child: 'My Friend Jen'. My hope is that it will continue to give children the peace of mind that I didn’t have. I also hope it will give young children with sickle cell the confidence to speak about their condition openly to spread more awareness.
What was the process for getting published? Were there any challenges?
Getting published was quite a challenging process. Originally, I wanted support from a major publisher in the hopes of creating an impact and raising SCD awareness. However, they continuously turned me down. They said that the book was a great idea but there wasn’t a need for such a book. Since major publishers didn’t see a need to support a children’s book on one of the most common genetic disorders in the world, I decided to publish it myself.
What keeps you motivated? What impact has your work had on others?
The difference that I have been able to make within the sickle cell community is what motivates me. Knowing that children can see themselves represented in my books and can use them as a tool to explain their condition to others is just one example of the impact my work has had. My Children’s books have won several awards and are recognized all over the world. I have also received great reviews about the positive impact it has had on children as well as adults too.
What future projects are you working on?
Having engaged with several different organizations whose objectives are also to support and raise awareness of sickle cell, there is a range of up-and-coming projects. Currently, we are working on an ongoing talk show-style podcast sharing the experiences of those impacted by sickle cell called ‘Conversations with Jen’. We are also currently running a campaign called #ChangeTheRecords to try and change the records of the number of people donating blood; particularly those from ethnic minorities who are statistically less likely to donate.
Are there any parts of your book that were inspired by your experience growing up with sickle cell?
The 'My Friend Jen' series is mostly inspired by my own experiences growing up with sickle cell. Although I use my own experiences, other individuals living with sickle cell can also relate to them.
How is it different being an advocate in the UK versus Jamaica?
Having carried out sickle cell projects in many different countries, I have learned that advocating can be very different in different parts of the world. Since being in Jamaica, I have spent time learning and understanding the culture of the community. I have found that sickle cell is still very much a taboo topic to speak about. Therefore, how I advocate will be very different in the UK.
Have you taken our In America Survey yet?