The Importance of Sickle Cell Caregiver Education and How to Help

Sickle cell is more than pain

It has been almost 2 years since my little princess was diagnosed with chronic back pain. In several articles, I have shared my experience and I believe that it is extremely important to use certain tools when we as parents go to the hospital with our children. Because of the fact that I see for myself what works and what doesn't work, I like to share my journey with you.

I spoke to the mother of a 5-year-old girl who has sickle cell disease and has been complaining of back pain for some time. She asked the parent group what to do. All parents shared their experiences and reassured the mother. After reading the messages I called her because I wanted to make sure she understood what the parents were saying.

Our conversation started very lightly, and she told me that her daughter had been admitted to the hospital. I shared my experience and explained to her that my daughter has been suffering from back pain for almost 2 years now and that we have been going to the physiotherapist every Wednesday for 6 months now. One thing led to another, and I shared all the information and all the steps we went through as a family.

Teamwork

When you experience chronic pain, the use of medication should be combined with other therapies. In my daughter's case, it helps to see a physiotherapist every week and soon we will also see a pain specialist. As soon as I notice a relapse, I try to analyze with the medical team how we can ensure that my child improves as quickly as possible.

One of the most important things is that the different specialists must be in contact with each other, or at least share each other's treatment plan so that they know exactly what is happening and why. If the medical team is well coordinated, this helps a lot.

It is also important that we as parents understand what is happening in our children's bodies. In the conversation with the mother, I asked a few questions because I wanted to understand if her daughter had chronic pain or a one-time pain crisis.

Knowledge is power

After the conversation with the mother, I felt a lump in my throat because I realized that the mother was not aware of very important actors that play a role in sickle cell disease. I called her again the next day to ask how she was and if she had a good conversation with the doctor. I had a plan but I didn't want to seem pushy. She indicated that she had not had any answers and wondered why her child was still in pain.

Together we started to prepare for the meeting with the doctor. I believe that as parents we should be the best advocates for our children. And we as parents need to understand what is going on. As a sickle cell advocate, I often assume that parents are aware of basic things such as hemoglobin levels, the importance of regular checkups (X-rays, ultrasounds, etc), etc. Unfortunately, this is not always the case.

It's our responsibility

As parents and advocates, how can we ensure that every parent can walk into the ER or hospital feeling confident and ensure that their child receives the best care? I believe that hospitals/specialists should provide every family with basic information. We as parents grow with our children and can ensure that our children receive the best care at home and in the hospital.

My mother was the one who gave me the right information when I was introduced to sickle cell disease. I still remember a conversation about folic acid. I sometimes missed days to give my daughter folic acid, and my mother sat down with me to explain to me why folic acid is important, but above all why it is important to use your medication as prescribed.

By understanding what happens in the body, we can also understand why certain actions are necessary. And in this way, we can also ask specific questions to the specialists and together improve the quality of care for our children.

Free resources

Do you know a parent who has a child with sickle cell disease? Make sure that they are aware of the basic information and share as much information as possible easily.

There are several websites and videos where it is very easy to explain what sickle cell disease is and how to deal with it. Below is an overview.

• CDC information about SickleCell: What is Sickle Cell Disease? | CDC
• Information about SickleCell and the change of the shapes: How this disease changes the shape of your cells - Amber M. Yates 
• Children’s movie about Sickle Cell Disease:  Keemaya and the Beach, My journey living with Sickle Cell. An 2D Animation movie for kids about SCD 
• There is one book that I would like to recommend when it comes to understanding Sickle cell, the different tests, labwork, imaging, etc: Hope and Destiny