Living Well With Sickle Cell Disease Self-Care Toolkit | oneSCDvoice
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Living Well With Sickle Cell Disease Self-Care Toolkit

key information

source: Centers for Disease Control and Prevention


A toolkit is a collection of materials that can be used to help you to manage your health and keep track of important information regarding sickle cell disease (SCD).

The Living Well With Sickle Cell Disease:
Self-Care Toolkit has multiple uses. It is designed to help you and your caregivers with management of your disease, medical care, services, and health providers. The toolkit also will help communication between the many health providers and service providers that are involved with patient care.

Because many doctors are not familiar with SCD, it is very important for you to take an active role in managing your own care. To make important decisions, you need to know about SCD, understand your treatment options, and then make the best possible choices for your health. Using the tools provided in this toolkit will help you to monitor your health care and manage your disease. Putting together a care notebook or binder that you can take with you wherever and whenever (for example doctor’s appointments, emergency room visits, vacation, and the workplace) you need it will help you organize all of your SCD-related medical information in one place so that you can keep track of information over time.


You might want to include the following:

-Doctor contact information.

-Medical appointments.

-Changes in medications or treatments.

-Test results.

-Vaccination and immunization (shots) records.

-Community resources.

-Any other information about your condition (facts found on the Internet, in brochures, and from any other sources of information and support).


By organizing all of your SCD-related information in one place, you can:

-Actively take part in, and advocate for, your own care.

-Work together with the doctors on your medical team.

-Remember new and complex information that is hard to process (when the doctor first tells you about a condition, if the condition worsens, or when treatment changes).

-If you are a teenager or young adult with SCD, you can begin to take responsibility for your own health history and information.

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