Articles and Updates from Phoenix Children's
For kids with sickle cell, the transition to adulthood brings new challenges to navigate as they learn to manage their disease independently.
At Phoenix Children’s, the Center for Cancer & Blood Disorders (CCBD) team provides transition resources for parents and kids to help pave the way for a healthier future, and a more manageable experience as they become adults.
“As sickle cell patients, we can live a regular life. We just have to push through and keep fighting and striving,” says Jacqueline Lowery, 27, a Phoenix Children’s patient living with sickle cell disease. “If you have a good team behind you like I do at Phoenix Children’s, you feel more supported to live a regular life.”
Jacqueline, who goes by Jackie, is currently enrolled in cosmetology school with the goal of opening a mobile salon. She also has a personal mission to help girls in group homes learn a trade. As Jackie has learned to live with sickle cell, she finds support through her family, friends and faith and wants other kids to know that they can live normal lives and pursue their goals as adults.
The key to a smooth transition process for kids living with sickle cell is three-pronged, says Sanjay Shah, MD, a hematologist at Phoenix Children’s CCBD.
“Health literacy, self-advocacy and community engagement are crucial to successful outcomes,” he says.
Understanding the whys, hows and what's of sickle cell disease is crucial to managing it. For most children with sickle cell disease, health literacy should start at a young age as they grow in awareness of their symptoms and treatments. And, thankfully, with medical advancements and an expanding body of knowledge about the disease, children with sickle cell are far more likely to reach adulthood than in the past. That is why an understanding of their condition is so important for a smooth transition to adult care.
Dr. Shah recommends that families discuss basic facts about the disease with their children as young as possible. As they get older, kids should learn more about managing sickle cell themselves, including medications, insurance, and how and when to contact their health care team.
“If they are primed early on, kids are more eager to learn in early to late adolescence,” Dr. Shah says.
Jackie agrees. “Information is the most important thing with sickle cell. As you grow up with the disease, you get used to having it and that it’s a blood disorder and that it’s painful, but that’s all you really know,” Jackie says.
“It’s so important for you to do your research and to know the things that will make you sick, know the things that will make you better, and know the things that can prevent you from getting sick,” she says.
In addition to textbook knowledge of sickle cell, Jackie recommends learning from the experience of others with the disease.
“The technical information about sickle cell doesn’t really give you the complete insight of what your experience is going to be or what it is,” Jackie says. “I can tell you what sickle cell is, but having conversations with people that have sickle cell and with different types – everybody deals with different types of pain. Everybody is dealing with different issues. The only way to truly understand sickle cell is to have these conversations.” A statement with which Dr. Shah wholeheartedly agrees.
Jackie also encourages others to be aware of and open about the mental struggles associated with sickle cell, especially at an early age. Since this chronic condition is a whole-body disease, it can lead to depression and anxiety, in addition to the physical symptoms.
“I think some people are afraid of depression and anxiety, but if we normalize it and make it a normal conversation and start early, we have the coping skills to make it through,” Jackie says.
With a solid foundation of scientific information and shared disease experiences, children with sickle cell can advocate for their health and well-being while they transition into adulthood.
Learning self-advocacy starts at home. Jackie recalls that at a young age, as she grew more aware of her condition, she felt like she was a burden and didn’t know how to communicate her physical and emotional pain.
Through the encouragement and support of her mother and extended family, who worked hard to promote open and compassionate communication channels, she learned to share her pain struggles and depression, so they knew best how to help her.
Parents and families can help their children become better self-advocates by setting a good communication example. Dr. Shah recommends parents take these practical steps:
- Track symptoms and flare-ups
- Keep a list of the child’s medications
- Attend regular doctor’s appointments
- Prepare questions ahead of time
- Share physician contacts and insurance information with their kids as they enter adulthood
Jackie has found that self-care is a form of self-advocacy. One example she uses is journaling to track her symptoms and her mental health. Logging her experiences has enhanced the way she communicates with her doctors and has enabled her to be a stronger advocate for both her mental and physical well-being.
As they become their own advocates, kids entering adulthood can boost their successful transition by finding hope and support in community.
Jackie recommends joining one of the many online communities for kids and adults with sickle cell. In fact, she started a Facebook group and YouTube channel herself called Life of a Sickle Cell Warrior. She’s been able to connect with people all over the world to share experiences living with sickle cell and to find support with one another.
“You need a support system. Your support system is the most important thing in your health,” Jackie says.
For Phoenix Children’s patients, a few local organizations are also available to provide resources:
- Sickle Cell Foundation of Arizona offers lists of providers familiar with sickle cell, educational materials and opportunities for connecting with local support groups
- Kwamie Lassiter Foundation promotes awareness of sickle cell disease and works to solve local problems with local solutions
For Jackie, having sickle cell disease doesn’t define her or stop her from living her best life. “Don’t allow fear to keep you from striving to do the things you want to do,” Jackie says. “I think that it’s important to encourage people with sickle cell, or any type of disease, to try everything. In order for you to have the life you desire, you cannot allow fear to keep you from trying the things you want to try in life.”
Kids with sickle cell entering adulthood (and their parents) have a variety of helpful resources available to them. For more information about sickle cell transition resources at Phoenix Children’s, please call 602-933-0920.