Where Can I Find More Information About Sickle Cell Disease?
Last updated: April 2023
What is sickle cell disease?
As a parent of a child with sickle cell disease (SCD), it is very important that we know exactly where to get the necessary information. A mother called me in a panic last week because she had just found out that her child has sickle cell disease. I calmly explained to her that sickle cell disease does not mean that your life will turn into a sad situation, but that it does mean that you should be aware of certain rules of life and that you should delve into the most important things about sickle cell disease.
Knowledge is power
The first thing we do as humans when we hear or see something is read on Google and preferably read the scariest stories about it. I have now figured out a number of things and now provide parents with a list. A list of websites, films, books, and organizations that make a positive contribution to the journey. Her reaction to my list triggered me to write this article. Because I realized that it took me several years to know exactly what information I need, what information I do NOT need, and where I can find the necessary information.
In this article I am going to share with you several important sources from my list. Knowledge is power, and education is the key. When you are confronted with sickle cell disease, the first thing you want to know is: What is sickle cell disease? How long can I live with sickle cell disease? What happens to my child who has sickle cell disease? Which doctor is the best to help him? Does my child need a diet? How do you get sickle cell disease?
There are thousands of questions a parent asks themselves when first confronted with sickle cell disease. Where can you find the information? On the websites below there are documents that you can download, information that you can read and many other things that are important when you have a child with sickle cell disease:
When you become acquainted with sickle cell disease, it is important that you make contact with a positive support system. A group of people who know exactly how you feel, what you are going through and what you need. There are a number of organizations that can help with this:
- Sick Cells
- Sickle Cell Consortium
- Sickle Cell Disease Association of America, Inc. (SCDAA)
Sickle cell advocacy
In the beginning you will have to learn how to advocate for your child. There is an organization that has certified lawyers and helps where help is needed. It is always nice to have someone next to you who knows exactly what needs to be done and who sees to it that your child gets the best help.
Sickle cell disease literature
- Hope and Destiny Series:
- A Doctor In A Patient's Body: Dreaming Big With Sickle Cell Disease and Chronic Pain:
This book provides clear-cut and in-depth information for the more than 100,000 Americans living with sickle cell disease. It is written by experts specifically for parents and caregivers. The updated (2023) 6th Edition includes new resources available to patients, parents, and caregivers, including information about the new Pinpoint app for teens with SCD. There's also a chapter on COVID-19 and its impact on SCD. The "Future Outlook" section details new clinical trials/research being worked on. Finally, the book offers pain management guidance for managing SCD pain.
This book is written by someone with sickle cell disease who struggled with her disease while in medical school. The author uses humor to share her journey. She touches on how she made it through school with disability accommodations, lesser-known natural remedies and simple techniques you can use to protect your health, along with her experiences navigating the convoluted healthcare system.
This is a book for everyone with a chronic illness, as well as their loved ones. It is especially crucial for those with sickle dell disease and chronic pain, because it reads like a survivor manual.
Children’s books about sickle cell disease
- Keemaya and the Beach, My journey living with Sickle Cell
- Elle Cole has published a book for teens titled The Ultimate Sickle Cell Activity Book: An Educational Resource for Preteens and Teens as well as the ABC's of Sickle Cell Disease book for kids
- The My Friend Jen series by Jenica Leah
- Little Miss Linda
There is a lot more books about sickle cell disease for adults and kids!
Movies/short films about sickle cell disease
- Keemaya and the Beach, My journey living with Sickle Cell: A 2D Animation movie for kids about SCD
- What is Sickle Cell Anemia?
- Sickle Cell Medical Advocacy by Dr. Simone
- Correct IV Fluids For A Sickle Cell Crisis by Dr. Simone
- How this disease changes the shape of your cells by Amber M. Yates
I really hope that these resources will guide you in the right direction. The more we educate ourselves on sickle cell disease, the better we can take care of our loved ones.
Are you interested in connecting with other sickle cell warriors?