What to know as I become an adult with Sickle Cell?
As you get older, you will change from your current sickle cell doctor to an adult sickle cell doctor. We want to make sure you are ready to become a healthy adult living with sickle cell.
Transition is the process of getting ready to leave your pediatric doctors and get your health care from doctors who are trained to care for adults.
We want to start teaching you about this at 12 years so that you are ready.
Download Transitioning: Becoming an Adult with Sickle Cell Disease (PDF)
Please read the transition policy Adolescent Transition Policy (PDF)
What happens when I turn 18-19 years of age?
- You will begin transferring to an adult doctor and to an adult medical care facility
- You have the right to make your own medical decisions.
What I need to know when I turn 19?
You have successfully become an adult in the healthcare setting in Alabama.
After you turn 19, you are no longer a minor. You have the right and responsibility to make your own legal choices
What does this mean for you as a patient?
- After you turn 19, your doctor talks to you, not your parents, about your health.
- Your health information and medical records are private (or confidential) so please let the doctor know if you do not want your parents/guardian to learn about your private health issues.
- It is up to you to make decisions for your own health care. If you need help making decisions, talk to your family, your support team, and your doctor about who needs to be involved and what you need to do to make sure they can be a part of the conversations.
Things to know
- The confidentiality between you and your doctor is legally known as the Health Insurance Portability and Accessibility Act, or HIPAA.
- Ask for a copy of the hospital privacy statement.
Here are some questions to make sure you are ready.
Below are some questions that you should think about and discuss with your parents and sickle cell medical team. These questions have been developed specifically for patients with sickle cell disease. Development of a sickle cell disease readiness for transition assessment.
Health Care Knowledge
- I understand what behaviors can cause a pain episode
- I can answer my doctor’s questions during my clinic visits.
- I keep track of my own medical appointments
- I know how to take my medicines (time, dose, how often) without help
- I am aware of what hydroxyurea is and how it affects sickle cell disease
- I understand how drugs, alcohol, and tobacco usage affect sickle cell disease
Independent Living Skills
- I know how to manage money and pay a bill
- I know how to write a check
- I know how to use an ATM card
- I have held a full or part time job
- I know how to get my prescriptions filled
- I know how to make my own medical appointments
- I go to my medical appointments on my own
- I can arrange transportation to my medical appointments
Education and Vocational Planning
- I have a vision for my future
- I plan to attain education (college or job training) after high school
- I know the types of work situations that could cause problems related to sickle cell disease
- I have talked to my parents or family about my hopes for the future
Social Support Skills
- I participate in activities at school and/or outside the home
- I have friends that I can talk to about sickle cell disease
- I have a good social support system
- I understand what healthy relationships are
Look for ways to get involved in activities and support groups from the Sickle Cell Foundation and Children’s of Alabama.
- You are not alone. Being a part of your sickle cell community is a vital part of transitioning to adulthood.
- Here are some informational links to find a Sickle Cell Foundation near you:
- A Transition Program designed with specific classes to help you and your child take charge of your life after pediatrics is available at Children’s Harbor Family Center (located at Children’s of Alabama.)
- You are encouraged to attend and complete the free transition classes by the time you are 18.
Learn about the medical coverage rules:
- The rules of medical care coverage for all third party payors (including Medicaid) change by the time you become an adult.
- We will help you find an adult doctor, in order to prevent a lapse in medical coverage and care.
- Beginning now, start thinking about where you may go for adult care and who might be your primary doctor and/or hematologists.