Transitioning from Pediatric to Adult Care

 Teen and Caregiver Together in Waiting Room

Accepting and Making Changes

Getting older with sickle cell disease brings new challenges. For teens living with this condition, one of the biggest changes is moving from pediatric care to adult care. This switch is more than just seeing a new doctor. It means learning how to speak up for yourself, making decisions about your health, and figuring out how to work with insurance on your own.

This change can feel scary at first. You are leaving behind doctors and nurses who know you well. You might have had the same pediatric care team since you were a child. But the truth is, growing into adult care gives you the power to take more control of your health. You are not alone in this process. With the right tools and a little guidance, you can make this move with confidence.

Learning to Speak Up for Yourself

One of the most important parts of becoming an adult with sickle cell disease is learning how to speak up about what you need. When you were younger, your parents or caregivers probably did most of the talking during doctor visits. As you get older, it becomes more important for you to lead those conversations.

Start by practicing how to explain your symptoms in your own words. Tell your doctor how your body feels during a pain crisis. Talk about what medicines help and what side effects you notice. If something feels off or if you are unsure about a treatment plan, say something. Your voice matters. You are the one living in your body, and nobody knows it better than you.

You can also start asking your own questions during appointments. Ask why a medicine is being prescribed or how a treatment works. Write questions down before your appointment if that helps. The more you speak up, the more prepared you will feel as you step into adult care.

Getting Comfortable with Adult Doctors

Adult care is different from pediatric care. The doctors may not always have the same warm bedside manner as your childhood team. Some may seem rushed or speak in terms that are hard to follow. This can feel like a shock if you are used to a close relationship with your pediatric team.

What matters most is finding an adult doctor who takes your condition seriously and listens when you talk. A good adult hematologist will treat your pain with respect, offer clear plans, and work with you as a partner in your care. It might take time to find the right one, and that is okay.

Ask your pediatric team if they can recommend adult specialists. You can also contact sickle cell organizations in your area to help you search. Once you find a doctor, schedule an introductory visit. Use that first meeting to see if they feel like a good fit. You have every right to switch if they are not meeting your needs.

Building a Support Team

You do not have to go through this change by yourself. Having people you can trust makes a big difference. This could be a parent, older sibling, mentor, or someone from a support group. These people can help you stay organized, go with you to appointments, and remind you that you are not in this alone.

Joining a support group can be helpful, especially if you do not know anyone else with sickle cell disease. Hearing how other teens made the switch to adult care can calm some of your worries. You can learn from what worked for them and avoid some common mistakes.

Also, do not forget the value of caregivers. If your parent or guardian has been helping you stay on track, involve them in the planning. Let them help you find doctors, understand insurance, and keep your records organized. Their support is still valuable even as you take on more responsibility.

Handling Health Records and Paperwork

One part of moving to adult care is making sure your medical history follows you. Adult doctors will need to know your full record, including past treatments, surgeries, blood transfusions, and pain plans. Ask your pediatric clinic to give you a copy of your records or send them to your new doctor directly.

You might want to keep a personal health file that stays with you. This can be digital or a small folder you carry. Include a list of your medications, allergies, emergency contacts, and any care tips that work for you. This is useful in emergencies when you are dealing with people who do not know your history.

Knowing your health story puts you in control. It means fewer mistakes and better care. It also makes it easier when you need to change doctors or go to the hospital in a new city. Keep this info up to date and bring it to each visit.

Understanding Insurance and Costs

Insurance can be confusing, especially if your parents always handled it. But as you get older, you will need to know what your plan covers and what it does not. This includes medications, clinic visits, lab work, and hospital stays.

Start by asking your parents to go over the basics with you. What kind of insurance do you have? Do you need to stay in a certain network? Is there a co-pay for visits or medicine? If you are on a public plan like Medicaid, make sure you know how to renew it once you turn 18.

If you are going to college or getting a job, find out what health benefits come with it. Some schools offer student health plans. Some jobs have insurance through work. If you do not qualify for either, check if you can stay on your parents’ plan until age 26. If not, look at your state’s health marketplace to apply for coverage.

Knowing When to Speak Up in Emergencies

One of the hardest parts of sickle cell disease is going to the emergency room and not being believed. Sadly, many young adults face this when they show up in pain. That is why it is so important to speak clearly, stay calm, and have your records ready.

Keep a printed pain plan or letter from your doctor that explains your diagnosis and treatment needs. Give this to the ER staff as soon as you arrive. Tell them what you usually get for pain and how fast it should be given. If you are treated poorly or made to wait too long, ask to speak to the charge nurse or hospital social worker.

You deserve respect. No one should treat you like you are making it up. Having clear proof and knowing what to say can make a difference in how fast you get help.

Managing Daily Life with More Independence

Moving into adulthood with sickle cell disease means more than just switching doctors. It also means learning how to manage your condition in daily life. This includes remembering to take your medicine, drinking enough water, keeping warm in cold weather, and getting enough sleep.

Set reminders if you need help staying on track. Use a pill box, phone app, or daily checklist. The goal is to stay consistent so you avoid crises. Even when life gets busy, your health comes first.

If you are working or in school, let your teachers or employer know that you have a medical condition. You do not need to tell every detail. Just enough so they know you might need time off or special care during a flare-up. Being open now can save stress later.

Making Peace With Change

It is normal to feel nervous about this change. You might even feel angry or unsure. That is okay. Growing up with sickle cell disease means growing into a lot of responsibility faster than others your age. It can feel unfair at times.

Give yourself space to feel whatever comes up. Talk to people you trust. If your clinic offers counseling or teen support, try it. You are not weak for asking for help. You are strong for taking care of your mind as well as your body.

You have already handled so much. This next step is just another part of your story. It does not define you. It is just a new chapter.

Keeping Your Future in Focus

Your health matters at every stage of life. Whether you are planning to go to college, start a job, or live on your own, your care should keep up with your goals. Talk to your doctor about how to stay on track. Ask about what to expect in the future and how to prepare.

Even if things feel uncertain, you are still building a future worth living. One where you are in charge of your body, your choices, and your care. Keep going. You have people in your corner. You have already come this far.

This transition might be big, but you are ready. Speak up. Ask questions. Take one step at a time. You are not alone.

Sources:

CDC on Sickle Cell Disease: https://www.cdc.gov/ncbddd/sicklecell/index.html

Sickle Cell Disease Association of America: https://www.sicklecelldisease.org

Got Transition Youth Resource Center: https://www.gottransition.org/youthfamilies 

American Society of Hematology Sickle Cell Resources: https://www.hematology.org/education/patients/anemia/sickle-cell 

Healthcare Transition Research Consortium: https://hctransitions.ichp.ufl.edu