Patient Leader Spotlight: Andressa Hunsel
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, caregiver, and author, Andressa Hunsel. 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?
It was a particularly difficult period for our family in the fall of 2020. My little princess was in the ER monthly, was admitted a lot of times, missed a lot of school and she was very sad. In the hospital they had really nice activities to distract her, but because of covid-19 everything was a bit distant. The playroom was closed, there was no contact with other children, so it was quite an extra lonely period.
At one point she was painting and she said that she would like to have a brother or sister. I told her that she already has so many sweet sisters and a brother. To that she replied: “I want a real brother or sister, one with sickle cell disease!” I was very shocked by that. So we started talking about why she said that and I noticed from her story that she felt extremely lonely and she thought it was mostly "unfair" that she was the only child in our family with sickle cell disease (SCD).
Filling a need
After our conversation I desperately went looking for a nice book or film, because I wanted to show her that there are many more children with SCD. Unfortunately I couldn't find anything that matched what I was looking for.
When she was back home, I decided to write my own book. One I could use for her when she's feeling alone. A book that suited our situation at the time.
She was allowed to go home in April. When we got home, I teamed up with people who understood and supported my urge. The book was intended to give parents and children hope and tools. Two days before her birthday, the published book was in the mailbox, July 2020. One of the best birthday gifts I could give her. Her own children's book, dedicated to my little princess and all the other warriors in the world.
By publishing this book, I hope to give caregivers tools so that they can show their children what SCD is. I have tried to explain to the children what SCD is as easy as possible. The illustrations in the book show why the children get pain episodes, but above all which rules they have to adhere to. The idea is for children to realize what is happening at a very young age, so that they are aware of living with SCD. The younger, the better!
What was the process for getting published? Were there any challenges?
I did the first release through a self publishing company, which gave me a lot of headaches. Usually the companies promise a lot, but once you pay them all aggressive sales strategies are gone.
I first googled how I could make sure that my book would be available and affordable. It was my first book, so the process was new.
What was the process like?
Formed a team with medical specialists (the book is written under medical supervision of a pediatrician, has been screened by several professors to make sure that the message gets across well and is psychologically “responsible”, illustrator, editor and a number of supporters)
Writing the book. A lot of corrections were made because of the feedback and things that we would have preferred to have changed. In addition to writing, you are also working with the illustrator, because the images must match what you want to say.
I started looking for a publisher who understood my mission and vision and who matched it.
After signing the contract I have to submit my story. It is called a manuscript.
A process of final adjustments and corrections of the drawings and text.
The Big moment! Publish the book.
Now the book is published! What then?
It was important to me that the book had to be affordable. My goal is not to make money with the book. My goal is to make information available and affordable to the children and families who need it.
So one of my biggest challenges was the price. I've been arguing with the publisher about the price for months, but they weren't willing to cooperate. The book was way too expensive.
When after 7 months I was tired of arguing I decided to terminate my contract and republish the book. I then published the children's book myself via Amazon. I was allowed to declare my own price there. There was a minimum price and you can decide for yourself what it costs.
I also used the process of having discussions with the publisher, to make a children's movie of the book. I filmed the book and put it on YouTube. In this way the children can watch a nice movie about SCD for free. The movie is in English and Dutch. You can watch it here.
In retrospect, it was a good thing that the publisher was so difficult. Because they triggered me to think creatively and get more out of myself.
What keeps you motivated? What impact has your work had on others?
My princess is what motivates me. Thanks to her I can give so much to the sickle cell community. I look at how much she can and does, how cheerful and hopeful she is. Then I can only feel blessed. Thanks to my motherhood I dare to step out of my comfort zone.
In the beginning, my focus was solely on children. But as I started to network more, I realized that my daughter will be an adult very soon too. So last year I decided to also delve into SCD in adults. I draw enormous strength from the feedback we get from the community.
Once a warrior or parent tells you that you've changed their life, give them hope, or just a simple thank you, you get so much energy and want to do even more. My mission is to create a safe and supportive environment for both children and adults.
What made you pursue publishing in different languages? How did you choose the languages to publish in?
My first book is in English because I live in an English-speaking country (USA). I was born in Suriname, and we speak Dutch there. In 2021 I noticed that the demand for a Dutch translation was only increasing, so I decided to publish this book in Dutch as well. We have carried out many beautiful projects with the Dutch edition. It was wonderful to see all the happy faces of the children who have had the book thanks to sponsors.
After the Dutch version was published, I was asked by a sickle cell organization in France if I was open to a translation into French. I looked for funds and had the book translated into French. My dream is to translate all my books into every language where SCD occurs, because SCD speaks all languages! Indian, Spanish, Arabic, you name it. It is very nice to see how the language connects.
I am currently also working on the Spanish translation. Because there is a great need for a Spanish version of the book. I've been getting the request for 2 years when the book will also be released in Spanish. So the intention is that it will be published in Spanish this year.
How does your daughter feel about your book?
My daughter's face when she first saw the children's book was magical! She feels proud and she tells everyone that she has a children's book. I think the best thing is that she can now proudly say that she has SCD, and that she dares to wear nice T-shirts with SCD. The book has helped her immensely to accept her condition, and to understand that she is much more than just SCD. She is a beautiful girl, a little queen, a sweet intelligent princess and she lives with SCD.
She also wrote part of the second children's book, so she is also one of the authors of the second book. We will go through this journey together, because it is important that she knows that she should never ever feel alone.
What future projects are you working on?
I am currently working with the pediatrician on a second children's book. This children's book will serve as a manual/guidelines for parents and children to understand and follow all the important things of SCD and thus improve the quality of life.
I am also expanding a sickle cell treatment room for adults. January 2022 we officially opened a sickle cell treatment room in the hematology department. Here, sickle cell patients regardless of their health insurance (including people without insurance) can get admitted 24/7. It’s like a special ER for sickle cell patients only. The hematologist and I are now expanding this treatment room because our first room has become too small.
This is a very nice sign. Because that means that we have succeeded in creating that safe environment for our adult warriors. The warriors meet other warriors, and strengthen each other. It is wonderful to see how many friendships have been formed in our treatment room. Depends on the pain and treatment plan they stay sometimes for a couple of days, and others for weeks.
I will continue to work on sickle cell projects, because as long as we don't have a sustainable solution for everyone, we cannot stop.
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