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Living with sickle cell disease means learning to manage your health proactively. While SCD is serious, many people live full, active lives by understanding their bodies, avoiding triggers, and working closely with their healthcare team.
Daily Health Habits That Matter
Stay Hydrated
Dehydration is one of the most common triggers for pain crises. Drink water throughout the day, every day.
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Aim for 8-10 glasses of water daily
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Carry a water bottle everywhere
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Drink extra during exercise or hot weather
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Limit caffeine and alcohol (they dehydrate you)
Get Enough Sleep
Fatigue and exhaustion can trigger pain episodes. Prioritize rest and listen to your body.
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Aim for 7-9 hours per night
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Keep a consistent sleep schedule
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Take rest breaks when needed
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Don't push through extreme fatigue
Exercise Safely
Physical activity is good for you! Just take it at your own pace and avoid overexertion.
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Choose moderate activities like walking, swimming, yoga
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Warm up slowly and cool down properly
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Stay hydrated during exercise
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Take breaks when you need them
Avoid Temperature Extremes
Both extreme cold and extreme heat can trigger sickle cell crises. Regulate your environment.
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Dress in layers for cold weather
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Avoid swimming in very cold water
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Stay in AC during heat waves
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Avoid hot tubs and saunas
Preventing Infections
People with SCD are more vulnerable to serious infections. Protection is critical:
Essential Protection:
✓ Stay current on vaccinations - Flu, pneumonia, meningitis, and COVID-19 vaccines are crucial
✓ Daily penicillin - Many people take preventive antibiotics, especially children
✓ Watch for fever - A fever of 101°F (38.3°C) or higher is a medical emergency
✓ Practice good hygiene - Wash hands frequently, especially during cold/flu season
Emergency Warning: Fever
If you or your child with SCD has a fever of 101°F or higher, go to the emergency room immediately. Don't wait to call your doctor. Fever can signal a serious infection that needs immediate treatment.
Managing Pain at Home
Not all pain episodes require hospitalization. Many can be managed at home with the right strategies:
Hydration & Rest
Drink plenty of water and rest in a comfortable position. Sometimes gentle movement helps too.
Heat Therapy
Use heating pads or warm compresses on painful areas (not ice—cold can make it worse).
Pain Medication
Take prescribed pain medication as directed. Don't try to "tough it out"—early treatment works better.
Distraction & Relaxation
Deep breathing, music, movies, or meditation can help manage pain alongside medical treatment.
When to Seek Medical Care
Know when pain or symptoms require professional care. Go to the ER or call your doctor if you experience:
• Fever 101°F or higher
• Severe headache or weakness
• Severe abdominal pain
• Chest pain or trouble breathing
• Extreme fatigue or paleness
• Sudden vision changes
• Pain not relieved by home care
• Priapism (prolonged erection)
School, Work & Daily Life
You have the right to accommodations that help you succeed:
At School:
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504 Plan or IEP for accommodations (extra bathroom breaks, water access, rest periods)
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Excuse absences for medical appointments and crises
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Allow makeup work without penalty
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Keep emergency plan on file with school nurse
At Work:
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You're protected under the Americans with Disabilities Act (ADA)
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Request reasonable accommodations (flexible schedule, remote work, rest breaks)
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You don't have to disclose your condition, but it may help you get support
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Document everything in writing
Medication & Treatment Options
Several medications can help reduce pain crises and complications:
Hydroxyurea
A daily medication that reduces pain episodes and complications. Safe and effective for adults and children.
L-glutamine (Endari)
An oral powder that can reduce pain crises and hospitalizations.
Crizanlizumab (Adakveo)
An IV medication given monthly that helps prevent pain crises.
Voxelotor (Oxbryta)
A daily pill that helps prevent red blood cells from sickling.
Blood Transfusions
Regular transfusions can help prevent strokes and other complications in some people.
You Can Thrive
Living with sickle cell takes work, but you can absolutely live a full, meaningful life. Connect with others who understand, build a strong healthcare team, and don't be afraid to advocate for what you need. We're here to support you.
Continue Learning
Understanding SCD
Learn about carrying the trait vs. having the disease
Living with SCD
Practical daily management strategies
Gene Therapy 101
Explore curative treatment options