🎯Three Phases · One Force Field
Every square belongs to one of three phases of mastery. Inside each square's detail panel, the four sections — Concepts · Skills · Actions · Plan — are the building blocks of these phases. Read each square with that ladder in mind.
📘 Learn It Tier 1 · Aware
Identity earned: Self-Advocate. The "know" — head knowledge, definitions, mental model of SCD and its red flags.
🛠 Live It Tier 2 · Active
Identity earned: Care-Team Member. The "do" — daily skills you can demonstrate and this-week actions that turn skills into habits.
📣 Share It Tier 3 · Certified
Identity earned: Ambassador. The "carry forward" — long-arc plan, teaching, mentoring, sharing insights with clinicians, advocacy.
🛡️Your Force Field — 16 Squares
Click any square to open its detail panel. Each square is a tile in your shield. Keep clicking, learning, and acting — your Force Field gets stronger every step.
What Is Sickle Cell Disease?
An inherited red-blood-cell disorder. Hemoglobin S bends cells into "sickle" shapes that block vessels and break down faster than normal cells.
Primer360 Human Anatomy
Hematology / Vascular
Bone marrow → red blood cells → hemoglobin → vessels → spleen, kidneys, lungs, brain. See where SCD lives in your body.
AnatomyWho Gets It?
Inherited — both parents must pass on the gene. Most common in people with African, Mediterranean, Middle Eastern, Indian and Latin American ancestry.
PrimerThe Numbers
~100,000 Americans. ~$2.4B/yr U.S. care cost. 70%+ of cost is preventable hospitalization. Life expectancy keeps rising.
PrimerKnow My Condition
Genotype matters. Know yours — HbSS, HbSC, HbSβ⁰-thal, HbSβ⁺-thal — each behaves differently.
Learn ItMaster Meds & Devices
Hydroxyurea, folic acid, penicillin (kids), pain plan, voxelotor, crizanlizumab, L-glutamine. Vaccines. Port care if applicable.
Learn ItSpot Red Flags Early
Fever ≥101°F · chest pain or trouble breathing · stroke signs (FAST) · priapism >2 hr · big tender belly · pain not breaking at home.
Learn ItTriggers & Mind–Body
Cold, dehydration, low-O₂ (high altitude/planes), stress, illness, alcohol, tobacco. Hydrate, warm up, breathe, sleep.
Learn ItMake Every Visit Count
Bring your passport. List 3 questions. Do teach-back. Ask: "If you were me, what would you do?" Map next steps.
Live ItCare Team Members
Hematologist, primary care, pain specialist, mental health, social worker, ophthalmology, OB if pregnant, transition counselor.
Live ItTelemedicine & Tech
Video visits for routine, MyChart for messages, home pulse-ox & thermometer, wearables, tele-pain coaching, digital pain diary.
TechInsurance & Cost
Day Hospital costs less & works better than ER. Hydroxyurea is generic. Co-pay help: SCDAA, NORD, HealthWell. FMLA / ADA cover work & school.
Live ItStigma, Equity & Access
SCD pain is real and often under-treated due to bias. Speak up safely. Document visits. Bring an advocate.
Share ItTeach, Mentor, Ambassador
Teach a sibling, classmate, coworker. Mentor a newly-diagnosed family. Speak at school, church, support group.
Share ItShare Insights with Clinicians
Write a short "what worked, what didn't, what we learned" letter. Help train residents and ER staff. Your story changes practice.
Share ItJoin the ROI Study
PHIT — Population Health Impact Tracking. Aggregate & anonymous. Help prove this program reduces costs and improves lives.
Study🩺 Hand-off to my Clinician
Print and bring to your next visit. This page tells your care team what you have prepared for, what you want to focus on, and how you would like to participate as an active member of the team.
- I am a Prepared Patient in training for Sickle Cell Disease. I have reviewed all 16 squares of this Force Field Fact Sheet.
- I have started building my Health Passport, my Red Flag list, and my When-to-Call-Before-the-ER plan.
- I want to teach back what I have learned and have you correct anything I have misunderstood — especially about hydroxyurea, fever response, and pain plan escalation.
What helps my visit
Two minutes for me to teach back. One question I prepared. One thing my family wants you to know. Confirm my genotype on the chart.
What I am working on
Spotting fever quickly · hydroxyurea adherence · switching to Day Hospital instead of ER for pain crises · mind-body skills · annual TCD/echo/eye exam.
How I want to participate
Shared decisions. Full med list before changes. Tell me your top 1–2 priorities so we agree. Use SHARE Approach. Treat my pain like the data say to.
🔬 Help Prove This Works — Join the FFH ROI & PHIT Study
The Prepared Patient program is being studied to see whether better preparation actually reduces ER visits, hospital stays, and total cost of care — for you and for the people in your circle of influence. Your participation is voluntary, your data is aggregated and anonymized, and you can withdraw at any time.
➕ Add-On Force Field Card · Device or Skill Mastery
If your care plan adds a medical device or new skill, bolt on a 5-step Add-On Card. For SCD common bolt-ons include: home pulse oximeter, thermometer technique, port care, exchange transfusion prep, MyChart use, hydroxyurea pillbox routine, day-hospital check-in.
Introduce
What it is, why it matters, what it does
Coach
Watch a demo + walk-through
Practice
Do it with a coach watching
Train
Use it daily with a check-in
Test
Demonstrate competence + earn badge
Ready to go deeper?
The Prepared Patient · Sickle Cell Disease course turns this fact sheet into a guided journey: simulations, teach-back, checklists, badge tests, and your printable Health Passport. Earn Aware → Active → Certified.