Know your condition
Understand your type of sickle cell disease, common triggers, treatment plan, and the warning signs that need urgent care.
Explore Sickle Cell Education →
Sickle Cell Hope Foundation
A program of MBS Health Network
Become Empowered
Your health. Your voice.
Your health. Your voice.
Your power.
Empowerment begins when knowledge becomes confidence—and confidence becomes action. Get practical tools to navigate care, speak up, and make informed choices.
Hope Starts Here
Where Hope Becomes Action.
Empowerment Is a Practice
You deserve to be heard, informed, and supported.
Living with sickle cell disease can require constant decisions—from managing symptoms to navigating appointments, school, work, and emergencies. These tools help you take the next step with greater clarity. Use what serves you and share it with your support circle.
Empowerment does not mean navigating sickle cell alone. It means having the knowledge, tools, and support to make your voice count.
Prepare for every visit
Keep your medications, care-team contacts, allergies, baseline symptoms, and questions together so your voice stays at the center of care.
Build Your Care Checklist →Speak up with confidence
Describe your pain clearly, ask why a decision is being made, request plain-language answers, and involve a trusted supporter when needed.
Strengthen Your Voice →Connect with support
You do not have to navigate sickle cell alone. Find resources, community support, and practical next steps for you and your family.
Find Support →
Be Ready Before You Need to Be
Your personal care checklist
A small amount of preparation can make it easier to communicate during routine care or a pain crisis. Download the professionally formatted checklist, save it on your phone, and keep a printed copy with someone you trust.
Keep these details close
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Your care team Names, telephone numbers, clinic, pharmacy, and preferred hospital
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Your health information Diagnosis, medications, allergies, complications, and baseline symptoms
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Your care plan Pain plan, hydration guidance, treatments, and emergency instructions
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Your support person Someone who understands your wishes and can advocate with you
Emergency warning: Call 911 or seek emergency care for trouble breathing, stroke symptoms, chest pain, severe weakness, loss of consciousness, or another life-threatening concern.
You Are Not Alone
Support makes empowerment stronger.
Whether you live with sickle cell disease, care for someone you love, or stand beside the community, your experience matters. Connection can turn uncertainty into confidence and confidence into action.
Words You Can Use
Advocacy can start with one sentence.
My pain is real. Please document what I am telling you and follow my individualized care plan.
Can you explain my options, the benefits, and the risks in language I can understand?
I would like my support person included in this conversation.
Remember
You are the expert on your lived experience.
Ask questions. You deserve clear, respectful answers.
Bring support. A trusted person can listen, take notes, and reinforce your needs.
Request documentation. Keep copies of plans, test results, and visit summaries.
Seek another perspective. When appropriate, ask for a specialist or second opinion.
Trusted Resources
Continue with authoritative information.
Use these national resources to learn more about sickle cell disease, symptoms, complications, treatment, and questions to discuss with your healthcare team.
CDC
About Sickle Cell Disease
Foundational information about types, inheritance, diagnosis, complications, and care.
Visit the CDC ↗ NIH / NHLBISymptoms and Emergency Signs
Patient-focused guidance about symptoms and when to seek emergency medical care.
Visit NHLBI ↗ ASHSickle Cell Patient Education
Information from the American Society of Hematology about care, therapies, and support.
Visit ASH ↗
Need help finding the right next step?
Connect with the Sickle Cell Hope Foundation for resource
navigation and support.
Contact the Foundation
Hope Starts Here
Knowledge opens the door.
Knowledge opens the door.
Your voice moves us forward.
Take one step today. Learn, prepare, connect, or help another person feel less alone.
Content basis: Patient-empowerment education informed by the CDC, NIH/NHLBI, and American Society of Hematology resources linked above.
Last reviewed: August 2026 • Next review: August 2027
Educational information only—not a substitute for professional medical advice, diagnosis, treatment, or your individualized care plan.