Taking Charge of Your Health and Health Care

A teenager talking to her doctor during a doctor’s visit

The Centers for Disease Control and Prevention (CDC) is raising awareness around sickle cell disease and ‘transition.’

Transition is the process of young people with sickle cell disease (SCD), a genetic blood disorder, learning to become more responsible for their health and transferring their health care to an adult healthcare provider. Learn about transitioning care with SCD, read tips to prepare for it, and find more resources to help manage transition.

For teens with sickle cell disease, transition is part of maturing into an adult.

Sickle cell disease (SCD) is a genetic blood disorder affecting red blood cells. People with SCD have abnormally shaped red blood cells that block oxygen from reaching the body’s tissues and organs. SCD is present at birth, and mild to severe health problems, such as pain crises, infection, and stroke can affect people with SCD throughout their lifetime.

When a child with SCD is young, parents or other adult caregivers are responsible for managing the child’s health and healthcare needs. Parents or other adult caregivers will schedule doctor’s appointments, manage treatment schedules, and make sure the child is both eating healthy and sleeping well to reduce the severity and occurrence of pain crises and other SCD-related health problems.

As young people with SCD enter their teenage years and mature into adults, the responsibility shifts from the caregiver to the teen themselves. This process is known as transition. During transition, teens and young adults with SCD also transfer their health care from a pediatric doctor (a doctor who treats children) to a doctor who focuses on treating adults (an adult healthcare provider).These teens will need to learn how to work with their adult healthcare provider to prioritize and manage their health.

Mikeia’s Story

When Mikeia left her home in Arizona to attend college in California, it was the first time she was away from her mother. “That’s when I had to learn how to speak up for myself and learn how to make appointments by myself…”

Read more of Mikeia’s story.

Young people with sickle cell disease can prepare for transition.

It is important for teens with SCD to be prepared for transition. Preparing for transition can make it more likely that teens with SCD will have more success transitioning care to an adult care provider and continue to receive adequate, regular care to be healthy.

Tips to Prepare for Transition

  • Search for a doctor who treats adults and is knowledgeable about SCD. There are a limited number of doctors who are trained to properly treat adult patients with SCD. Reach out to local SCD organizations for help finding a doctor trained to treat SCD to continue to receive treatment and care.
  • Be prepared to educate healthcare providers who may be less familiar with SCD and your health history. Keep a record of your medical history and give it to your new adult care provider.
  • Join a support group for young people with SCD going through transition. You don’t have to go through transition alone. Get connected and share your experiences.
  • Learn about health insurance options and how eligibility may change as you get older. These changes can affect access to healthcare services, treatment options, and the ability to receive timely care.

Transition can be a difficult and overwhelming time for teens with SCD because it can also coincide with major life changes and milestones that young adults will face as they mature into adulthood. Life changes, such as attending college, finding a job, or moving to a new location, can make it harder for teens with SCD to manage their transition. By being prepared with resources, knowledge, and support, teens with SCD can overcome these challenges and stay healthy during transition.

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