An Interview with Andressa Hunsel
Andressa is the author of the children's book Keemaya and The Beach: My Journey Living with Sickle Cell. Inspired by her daughter's experiences with sickle cell and her experience as a parent, she's dedicated herself to advocate and provide resources for families with children living with sickle cell.
Check out the interview with Andressa below:
When did you learn that your daughter had sickle cell disease?
When my daughter was born we knew that there was a possibility that she had SS (sickle cell anemia). But we needed to wait for the test till she was 2 and a half. There was no newborn screening in Suriname, where we're from.
What’s it like to be a parent of a child with sickle cell disease?
At the beginning, it was scary, because of the unknown. But after I got all the information and had long sessions with doctors and specialists I felt more confident.
Sometimes I still feel a little anxious for example when she is complaining about pain. Because I’m always on standby for a crisis. And that can consume a lot of energy. The worst part of being a parent of a SCD child is dealing with the crisis knowing that you can't take away the pain. Other than that I feel very blessed to be her mom and be able to give her the best of the best.
What do you wish you’d known about SCD before the diagnosis?
That living with SCD is not being in the hospital 24/7. Living with SCD can be awesome and happy, too! Since my pregnancy, I was aware of the risk that she has SCD. So when she was born I was following the life rules to prevent a crisis.
What tips or suggestions do you have for other parents?
- Start as soon as possible to teach your child what SCD is and make them understand the life rules. It makes it a lot easier!
- When they are in pain, focus on them, comfort them (give hugs, show love, show that you care, be strong), put your emotions aside, and be their advocate. You are all they have.
- Do what you can to prevent a crisis.
- Book preventative doctors' visits on time, do all the tests, screenings, etc.
What is your relationship with your daughter’s health care provider? Do you feel supported?
Very good. I have my daughter's first specialist on Whatsapp, iMessage, speed dial. Even if he isn’t her specialist anymore. But I always make sure that I'm one step ahead and understand what the doctors are saying. Her current health care providers are very supportive, so I have nothing to complain about.
What are some helpful resources that you’ve found helpful as a caregiver?
My most helpful resources are the specialists, research documentation, and other warriors.
How do your friends and family help you support your daughter’s health?
Everybody knew since day one how to prevent a crisis. In my situation, my mom and sister were the first ones to educate themselves about SCD. I was very anxious at the beginning and didn’t want to hear anything about it. I was so mad at the world. It was really my mom and sister who showed me that life can be beautiful with SCD, too. The support was always awesome.
I also received support from my workplace, friends, etc. I only needed to say “My little princess is in pain," and I could take my days off to be in the hospital as long as I needed to. Nothing to complain about.
Did you go to the ER within the past year?