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For Teens with Sickle Cell Disease
Sickle Cell Disease Program

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Sickle Cell Disease Program
Sickle cell Transition Education Project (STEP)


What is transition?

Children's National Sickle cell Transition Education Project (STEP) - Transition
Transition means changing or moving from one stage or place to another. Everyone goes through transitions in life – like when you graduated from elementary school. Transition can be exciting, involving new experiences. But, transition can also be difficult and scary, especially when you are not prepared for it. 

An important transition in your life will be moving from child to adult-centered healthcare for your sickle cell disease. This transition occurs differently around the country depending on your sickle cell program, but usually involves changing your sickle cell doctor and hospital. Transition also involves other important aspects like:
  • Having a better understanding of sickle cell disease
  • Answering and asking questions at your medical appointments
  • Making your own medical decisions
  • Taking your medicines independently
  • Advocating (speaking up!) for yourself

With the help of this site, your health care team, and your family, you can have a successful transition!

When does transition occur?

Transition should not happen at any one time or age. Instead, transition should be a gradual process; it is something that you, your family, and your healthcare team work on over time.

It is never too early to start thinking about transition because preparation leads to success.  It is a good idea to start creating a transition plan with your healthcare team before age 14. You will be able to work on this plan for a few years before actually moving to a different doctor or hospital.

It is important to know that some pediatric hospitals have different practices and rules regarding care of older patients. For example, at some places patients over the age of 21 cannot be admitted to the pediatric hospital. At other places the age limit is 18 or 22 years. Ask your doctor about the policies at your hospital.

Policy at Children’s National Medical Center (PDF)

Where should I transition?

Talk to your healthcare team about this important question. Depending on your location you may have many options or one preferred place.
Washington, DC area adult sickle cell doctors (Coming soon)

Why do I need to transition?

Transitioning allows you to become a successful, independent adult. While you might not like some of the responsibilities that come with transition, remember that you are gaining more privileges. Through transition, you earn the freedom to be in control of your own life. 

Transition can be difficult because you might be leaving a pediatric doctor or healthcare team that knows you well and that you like. These individuals, however, are often not specifically trained to treat adults. Treating adults and children with sickle cell disease can be very different, and pediatric hospitals are designed to take care of children, not adults. 

Get prepared

This website is designed to help prepare you to transition from the world of pediatrics to adult medicine.  We hope this website will help you become your own health advocate.

What is an advocate?

An advocate is someone who stands up for a cause.  As a teen with sickle cell you now need to start speaking up—advocating— for yourself.

Listen to some young adults with sickle cell talk about advocacy.

To become a good advocate for yourself, you must practice talking to your doctor independently.  Check out this video on “Talking to Your Doctor” and learn about the GLADD (Give, Listen, Ask, Decide, Do) method

Hear from others with sickle cell talk about their transition experience (coming soon).

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