What is transition?

Transition is when a person moves from their childhood doctor, to an adult doctor. This happens from the ages of 18-30.

Transitioning from childhood to adult care can be a hard time for people living with sickle cell disease. People transitioning have the highest number of hospital visits and repeat hospital visits compared to older people with sickle cell disease.

When people with sickle cell disease do not have the proper information to transition, there is a greater chance of having a shorter life. The Sickle Cell Disease Coalition has put together important information that will help those going through transition.

We hope that, by providing this information, people with sickle cell disease will be able to better take care of their health as they transition from childhood to adult care.

AVAILABLE TOOLKITS

Click the toolkit below for additional information.

This section includes questions about your health that you should know the answers to. It will be important to have these answers before you see your new doctor. The “resources” will help you put together your answers. Information about different treatment options are also included in this section.

  • Do I have any eye damage from sickle cell disease?
  • What is my dental (teeth) evaluation?
  • How well are my lungs working?
  • What is my cardiac (heart) evaluation?
  • Are my kidneys working properly?
  • Do I have silent strokes?
  • What is my immunization status?
  • Who is on my current primary care health team?
  • What are my current medications?
  • What are the most important components of my medical history (surgeries, life-threatening medical complications, knowledge about challenges with blood transfusion therapy)?
  • What kinds of treatments for sickle cell disease am I taking?
    • Hydroxyurea (indications, outcomes, side effects)
    • Other treatments (present, future)
    • Blood transfusions (indications, side effects)
    • Transplant (indications, outcomes, side effects)
  • How does my sickle cell disease affect my risk for sexual infections?
  • How could my sickle cell disease affect my chance to have children?

Education

This section includes questions about your sickle cell disease that you should know the answers to. It will be important to have these answers before you see your new doctor. The resources section has information that will help you learn more about your sickle cell disease.

  • What is my knowledge of the following things?
    • The sickle cell problems I have had
    • Sickle cell disease pain plan, including how I am taking long- or short-acting opioids
    • Ability to manage pain according to pain plan
    • How to prevent complications of sickle cell disease
    • Things that cause my pain such as cold weather, cigarette smoke, and others
    • The importance of going to the doctor quickly when I get a fever
    • Symptoms of stroke
  • Can I find medical care without too much help from my parents?
  • Who is on my future adult primary health care team?
  • If considering having children, what is my partner's sickle cell trait status?
  • What is the risk of my offspring having sickle cell disease?
  • Can I tell my doctors how I learn and remember things best?

Social

This section includes questions your new adult doctor might ask you. These questions might be different from the questions the doctor you had as a kid or teenager asked you. It will be important to know the answers to the questions in this section before you visit your new doctor.

  • Do I know how to talk to a doctor without my parents or guardian?
  • Do I know how to make appointments and follow through on a medical care plan without help from my parents or guardian?
  • Have I visited my adult health care team before my official transition?
  • Do I know how to make my own decisions as a young adult? If the answer is no, then a guardian or protector should be chosen by a judge to manage your health and daily life.
  • What is my health insurance status?
    • How much is my copay?
    • What are my benefits?

About SCDC

THE SCD COALITION IS AN ALLIANCE OF OVER 100 ORGANIZATIONS UNITING TO CONQUER SICKLE CELL DISEASE.

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SCDC Updates Directory

SCDC Updates Directory Since its founding in 2016, the SCD Coalition has published its SCDC Update e-newsletter to share timely and relevant information with the...

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