Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Spark Good Care Guide
source: SparkSickleCellChange.com / bluebird bio
year: 2023
summary/abstract:As a person living with or caring for someone with sickle cell, it is important that you get care that works for you and your family. Whether you already have a treatment plan in place or you’re just beginning to put one together, you’ve likely asked the question: how do I get the best care possible for myself or my loved one? This guide aims to help with that and includes resources on the following:
- Building a care team
- Developing a stronger partnership with your doctor and their practice and/or hospital
- Navigating the healthcare system
- Creating a personalized long-term treatment plan with your care team
- Asking your doctor questions about symptoms, complications, and potential treatment options tailored to your individual needs and goals
This guide aims to give you some tools to evaluate and strengthen your care plan in partnership with your care team. If you feel your care plan isn’t working for you, there may be some information here to help you try a new approach.
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