By Z’Leah N. Liburd, BSW
In celebration of National Family Caregivers’ Month in November, Z’Leah Liburd, a previous Government Affairs and Family Engagement Intern at the Association of Maternal and Child Health Programs (AMCHP), invited caregivers of children with sickle cell disease to share what life is truly like caring for a child with a serious chronic medical condition. She spoke with Tobi Amosun, Tamara James, and Hermionne Johnson— each of whom brings their personal experience as a caregiver—to share their stories.
What is Sickle Cell Disease?
According to the Centers for Disease Control (CDC), sickle cell disease (SCD) is a serious genetic condition that affects the red blood cells in the body. Typically, red blood cells are round flexible, allowing them to move easily through blood vessels and deliver oxygen throughout the body. In people with SCD, however, these cells become curved and rigid—shaped like a sickle—making it harder for them to travel smoothly.
These sickled cells don’t live as long as healthy ones, which leads to a constant shortage of red blood cells. Even more concerning, they can clump together and block blood flow, causing intense pain and potentially life-threatening complications. The severity of SCD can vary widely, with some individuals experiencing manageable symptoms and others facing frequent and serious health challenges.
Meet the Contributors
Interviewee 1 — Tobi Adeyeye Amosun, MD, FAAP
Deputy Commissioner for Population Health of the Tennessee Department of Health
Dr. Amosun is a previous AMCHP Board member and a parent of a son with sickle cell disease.
Interviewee 2 — Hermionne Johnson, RN, MSN
Chief Executive Officer, Ayana’s Hope Cells; Clinical Nurse Educator
Ms. Johnson has worked in pediatric and adult home health, medical oncology, dialysis, community care, and public health. Prior to entering nursing, she served in the Navy and Air Force and is now the caregiver of a daughter with sickle cell anemia.
Interviewee 3 — Tamara James
Hillsborough County School District
Ms. James is the caregiver of two children with sickle cell anemia.
Interview
Please share a bit about who in your life has SCD and your experience as a caregiver.
Dr. Amosun: “My 12-year-old son is the person who has sickle cell. Although the diagnosis caused a lot of anxiety at the beginning, it is now a normal part of our family’s life. It does force us to think a lot about planning for the future and always having an emergency plan. It has also emboldened me to give him every opportunity that he can get to have a normal childhood and be a strong advocate for his health. With SCD comes some common misconceptions that can cause negative stigmas. The most common ones that have been reported include the idea that sickle cell is contagious; sickle cell only impacts people who are Black or of African descent; if people who have sickle cell does not look like they’re in pain, then they must not be in pain; people living with sickle cell are lazy; and all sickle cell patients are drug abusers.”
Ms. Johnson: “My daughter has sickle cell disease, and being her caregiver has been both a profound privilege and an ongoing challenge. Watching her navigate pain crises with courage has taught me resilience and compassion. As her advocate, I’ve learned to navigate the medical system, communicate effectively with healthcare professionals, and provide unwavering emotional support. This journey has reshaped my priorities and strengthened our bond immeasurably.”
Ms. James: “I have two amazing boys that I take care of that has sickle cell anemia. Being their caregiver can be overwhelming and full of surprises. Having this disease makes their daily life activities vary on a day-by-day basis.”
Please educate us about any misconceptions or misunderstandings about SCD that you have encountered.
Dr. Amosun: “The recent advances in SCD are often overshadowed by the historical preconceptions about the disease. Many folks do not realize that the recent advances, from hydroxyurea to gene therapies, have completely changed SCD from a disease that is significantly life-limiting to a chronic disease that can be managed well.”
Ms. Johnson: “One of the biggest misconceptions I’ve encountered is the belief that SCD only causes occasional pain. In reality, it’s a lifelong condition affecting nearly every aspect of health. People often underestimate the invisible toll it takes, from chronic fatigue to mental health challenges. It’s also wrongly assumed that all treatments work equally for everyone, ignoring the individualized nature of care.”
Ms. James: “My misconception or misunderstanding about SCD with my children is that sometimes when they’re hospitalized, they have a mental fear. They are scared to return home because they are medically comfortable in their environment. They think when they return home, their pain might return.”
How might your daily routine as a caregiver look different from that of non-caregivers?
Dr. Amosun: “Now that my son is older, he has taken over more of his care. His daily routine includes administering his morning medications himself and ensuring adequate hydration and rest. The other part is making sure that, as parents, we are available to the school nurse or to teachers as needed. I do think that we are more cautious with making sure that he always has adequate sleep, since that affects whether or not he has any pain.”
Ms. Johnson: “My daily routine revolves around proactive care. From ensuring she stays hydrated and avoids triggers like extreme weather to juggling appointments and monitoring for signs of a crisis, caregiving requires constant vigilance. Unlike others, I plan outings with hospital proximity in mind and keep emergency supplies—such as pain medications and heat packs—readily available at all times.”
Ms. James: “The difference between my routine and other individuals is that I never know when any of my children will go into a crisis. Once that happens, everything changes, our plans for the day are put on hold.”
How do you handle unpredictable SCD symptoms, and what contingency plans do you have for them?
Dr. Amosun: “My husband and I juggle our calendars and work together to make sure that one of us has a more flexible schedule, which changes depending on our work demands. We have both changed jobs so that there is the flexibility to work from home, as needed. We also choose carefully where we go for vacations, to make sure that there is a tertiary care children’s hospital available within a short drive. There are certain places that we can’t travel as a family (high altitude locations or activities with extreme exertion). SCD has forced us to be able to pivot quickly.”
Ms. Johnson: “Unpredictability is a constant challenge, so preparation is key. We have a hospital bag packed at all times, complete with medical records, snacks, and comfort items. I maintain a close relationship with her care team and have a clear crisis protocol. Flexibility in work and personal commitments has been vital—understanding that plans may need to change at a moment’s notice has been a mental shift for us as a family.”
Ms. James: “Once any of my children go into a crisis, I have to administer medication at home prescribed by their specialist. Depending on the outcome of medication at home, if it doesn’t work, my next step will be to head to the emergency room, where they can get proper medical care.”
For caregivers of children, with the potential for frequent sick days, medical appointments, and hospitalizations, how do you work with teachers, school staff, or other educational supports to ensure the child can succeed academically?
Dr. Amosun: “We have been doing this for years now, so I feel like we are becoming experts. Every new start to the school year, we give the CDC guidelines to his new set of teachers. We are also on a first-name basis with our school nurses, and we use an Individualized Education Program (IEP) and 504 learning plans for physical and academic adjustments. Since my son is in the gifted education program, he receives extra support when it comes to academic planning. In middle school, where there is a different class each period, the most important lesson he’s learning lately is how to advocate for himself when his parents aren’t there.”
Ms. Johnson: “Communication is critical. I meet regularly with her teachers and school administrators to explain her condition and develop an IEP. This includes accommodations like flexible deadlines, access to a nurse, and leniency with attendance. Staying organized and providing updates ensures the school is a partner in her success. I also use online resources and tutoring to help her stay on track academically.”
Ms. James: “You have to form a relationship with your school and the teachers and make sure that they know every time your child is in a crisis. Always have make-up work for them to complete. There is always an option of classes in the summer or programs that they can take part in after school to help with academics. It is also important to make sure that the school and teachers are following the guidelines of the child’s IEP if they have one in place.”
What are some of the most significant challenges in caring for someone with SCD, and how do you cope with them?
Dr. Amosun: “In my experience, the anxiety and anticipatory grief that come with being the caregiver for a child with a serious chronic medical condition are not recognized enough. Especially with SCD, where the disability is not always obvious, others will assume that everything is okay. It can be very isolating for both the parent and the child. There are also tremendous financial pressures with SCD, especially for families who aren’t on Medicaid or in states without a waiver. Another area of challenge that we haven’t reached yet is the transition from pediatric care to the adult care world.”
Ms. Johnson: “The emotional toll is significant—seeing a loved one in pain and feeling helpless at times is heartbreaking. There’s also the logistical challenge of balancing caregiving with work and personal responsibilities. To cope, I lean on faith, therapy, and support from family and friends. Celebrating small victories and taking time for self-care, even if it’s just a quiet moment with a cup of tea, helps me recharge.”
Ms. James: “Some of my challenges dealing with SCD are the fact that I have to watch my children endure pain and discomfort, and that there is not much that I can do to ease their pain. That can be very difficult for a loved one to endure. I also worry when the weather changes because their bodies cannot handle cold weather.”
What specific resources, community groups, or technologies do you recommend to other caregivers?
Dr. Amosun: “Our biggest area of resources has been through our local pediatric hematology program at our children’s hospital. Their social workers have been with us since my son was diagnosed, and that level of familiarity is invaluable. We’ve also recently discovered our local sickle cell advocacy group, which creates a community outside a medical setting. From a technology angle, automating our medication delivery online has helped save a lot of time. When my son was younger, using our Alexa devices as medication reminders was helpful to get us in the habit of taking them on time.
Sickle cell disease, while a challenge for our family, has been a way for us to learn to be more flexible and also advocate for our child’s health. As a caregiver of a child with SCD, there are so many resources at your fingertips that many have never heard of, including the National Sickle Cell Advocate Network (NSCAN). NSCAN is a national network of patients and families looking to advocate, educate, and help people living with or who are affected by SCD thrives on making those with SCD aware that they’re not alone.”
Ms. Johnson: “The Sickle Cell Disease Association of America (SCDAA) and local support groups have been invaluable for connecting with others who truly understand. Technology such as medication reminder apps and telehealth platforms makes caregiving more manageable. I also recommend exploring social media communities for tips and emotional support. These networks remind you that you’re not alone in this journey.”
Ms. James: “There are sickle cell groups and organizations that you can join with other parents and loved ones to help you cope. They are going through the same things that you are. They can help give you ideas and help give you support mentally and physically because they can relate to your lifestyle.”
Sickle cell disease significantly affects the red blood cells, restricting oxygen flow and increasing the risk of dangerous clots. While the science behind SCD can be complex, the human side is clear: individuals living with SCD need specialized care often provided by family members who are in this role without prior experience or medical training. These caregivers become experts through love, persistence, and the daily realities of supporting their children, parents, siblings, and others. Creating a community among caregivers helps fill the gaps that science alone cannot address, forming a vital circle of care and support.
AMCHP is deeply grateful to Dr. Tobi Adeyeye Amosun, Ms. Tamara James, and Ms. Hermionne Jones for sharing their time, expertise, and powerful insights with our readers.
Helpful Resources
- AMCHP MCH Bridges Episode #20 — Care Maps: The Power of Mapping Support for Children & Families
- Care mapping serves as a powerful tool to help families and professionals coordinate and enhance support and care for children and youth with special health care needs. By visualizing the complex network of care, these maps improve communication and foster a shared understanding among all involved.
- CDC — Sickle Cell Disease
- Health Resources & Services Administration Sickle Cell Disease Programming
- National Sickle Cell Advocacy Network
- CMS Sickle Cell Disease Provider Toolkit: Resources for Health Care Professionals to Support Individuals with Sickle Cell Disease
- Sickle Cell Disease Coalition Resources
- Supporting the Students with Sickle Cell Disease: Caregiver Back-to-School Checklist
