🎯Three Phases · One Force Field
Every square belongs to one of three content types — not three levels you climb. They tell you what kind of square you’re reading: a concept to understand, a habit to live, or a way to share what you’ve learned. Where you actually track personal progress is your Prepared Patient Course (modules completed) and the Skills Lab (skills signed off). Inside each square’s detail panel, the four sections — Concepts · Skills · Actions · Plan — are the building blocks.
📘 Learn It Content type
The Learn It squares are concepts to absorb — head knowledge, definitions, the mental model of SCD and its red flags. Read these first.
🛠 Live It Content type
The Live It squares are daily skills and habits to build — the “do” of living well with SCD. Your Course and Skills Lab are where you practice and get signed off on these.
📣 Share It Content type
The Share It squares are how you carry it forward — teaching, mentoring, advocating, joining research, paying it forward to other patients.
🛡️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.
StudyThree things to learn before you actually need them: when to use which door, how to describe a symptom, and what good questions look like.
This is the teaching. The fillable forms, editable question lists, printable summaries, and post-visit teach-back live in the Prepared Visit Tool. Trackers (pain log, hydration, sleep) live in your Prepared Patient Course.
When something happens — which door do I use?
Sickle cell pain and symptoms run a spectrum. Use the ladder, not the binary “call or 911.”
Handle at home
- Pain in your usual pattern, breaking with your home plan in the agreed time
- Mild cold-trigger achiness that warms-up and hydrates away
- Tiredness on a normal-busy day
Log it. If it doesn’t break in the agreed time — move up the ladder.
Call the office / message the portal
- Pain crisis that’s improving slowly but not by your usual timeline
- New joint swelling without a fall or injury
- Darker urine, or much less urine than usual
- Running low on hydroxyurea, folate, or pain meds — before you run out
- Persistent low-grade temp (99-100°F) for >24 hours
Same day. Your team has 24/7 on-call. Don’t wait for Monday.
Urgent / Acute care (Day Hospital if you have one)
- Pain not breaking with your home plan after the agreed time, and no fever or chest symptoms
- Vomiting / can’t keep fluids down — risk of dehydration crisis
- Mild new headache that’s lasted hours, no neuro signs
SCD Day Hospital, when available, is faster and cheaper than the ER for pain crisis management.
ER NOW / call 911
- Fever ≥101°F — this is an emergency for people with SCD, every time
- Chest pain, trouble breathing, or new cough with fever — possible acute chest syndrome
- Stroke signs (FAST): face droop, arm weakness, speech change, sudden bad headache
- Priapism lasting >2 hours
- Big tender belly, especially in a child — possible splenic sequestration
- Severe pain not breaking with anything you’ve tried
If you’re unsure between Tier 3 and Tier 4 — pick Tier 4. SCD emergencies kill quickly.
How to tell your doctor about a new symptom in 30 seconds
Doctors are listening for six things every time you describe a new symptom. If you give them all six, you cut their detective work in half — and you’re less likely to leave out the detail that changes everything.
What is it?
The sensation in plain words. Sharp · dull · burning · pressure · pulsing · numbness.
How bad?
0-10 scale, or compare to your worst pain crisis. “Like a 5 crisis” tells your team a lot.
When did it start?
Date, time, and what you were doing. “Yesterday after I got cold waiting for the bus.”
What made it worse?
Movement · cold · standing · breathing · eating · anything you tried.
What helped?
Heat · hydration · rest · ibuprofen · oxycodone · prayer · all of the above.
What else was new?
Fever · cold · new med · supplement · alcohol · travel · missed dose · stress. The thing you almost forget to mention is usually the thing that changes the diagnosis.
“My back pain started yesterday afternoon, it’s a 7, came on while I was outside in the cold, ibuprofen took it down to a 4, and I also had two episodes of darker urine this morning.” That sentence gives your hematologist the whole picture in 12 seconds.
Use these tools when you’re actually preparing for a visit
The fillable Pre-Appointment Checklist, the editable question lists, the printable summary, the post-visit teach-back — those are workflow, and they live in the Prepared Visit Tool. This Fact Sheet teaches you the concepts above so you understand *why*; the Visit Tool walks you through *doing it* for your next appointment.
Questions worth asking — what good questions look like
These are examples of what to ask. Read them so you know what a strong question sounds like. When you’re actually preparing for a visit, the Prepared Visit Tool lets you check the ones you want, write your own, and print or send them to the portal.
Four that apply to every patient, every condition, every visit:
- “Could this be a side effect of one of my medications, a supplement, or something else I’m doing — and should we change that?”
- “Would any non-drug therapy help — physical therapy, meditation, rest, ice or heat?”
- “If I can’t afford this medication or this test, can we talk about samples, alternatives, or a social worker who can help?”
- “What should I be watching for between now and my next visit — and when do I handle it myself, when do I call your office, when do I go to urgent care, and when do I go to the ER?”
Questions specifically for sickle cell
- “Should we check my kidneys (urine protein, eGFR) this visit, or this year?”
- “Is my hydroxyurea dose still right for my labs — and when was my last fetal hemoglobin level?”
- “Am I a candidate for any of the newer disease-modifying therapies — voxelotor, crizanlizumab, or gene therapy?”
- “What’s my plan if I get a fever while traveling, or somewhere my team can’t see me?”
- “When was my last eye exam (retinopathy screen), and when am I due for the next one?”
🩺 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.