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When it’s sickle cell
For people who have sickle cell disease or sickle cell trait, parents whose baby’s newborn screening came back with it, and the people beside them. This page passes on, by name, what the National Heart, Lung, and Blood Institute (NHLBI) says: which symptoms are emergencies, what to do in a pain crisis, what the trait means, how testing works, the treatments there are now, living with it day to day, and periods, birth control and pregnancy. It builds the questions to ask at a visit and prints a card to carry. Take only what you need today.
Right now
- Get medical care or call 911 right away for: severe pain; a fever of more than 101.3 degrees Fahrenheit (38.5 Celsius); chest pain, coughing or shortness of breath; extreme tiredness, dizziness or an irregular heartbeat; or an erection that lasts 4 hours or more. NHLBI says these serious symptoms are emergencies and need treatment right away.
- Signs of a stroke (sudden weakness, numbness on one side of the body, confusion, or trouble speaking, seeing or walking): NHLBI says to call 911. It happens to children with sickle cell disease too.
- If it is someone else, NHLBI says the same: seek care or call 911 for them.
- Thinking about ending your life? Call or text 988, at any hour.
More help
- Pain that stays: When pain doesn’t go away.
- Keeping track: My medicines, Symptom diary and My emergency card.
- Before a visit: Get ready for your appointment.
- Signs of a stroke: When it might be a stroke.
- No insurance, or a bill you can’t pay: When you need a doctor and can’t pay and When a medical bill is too much.
- School and work: Help at school for your child, Ask for what helps you work and Applying for disability benefits.
- Pregnancy: Pregnant, or with a new baby.
- Looking after someone: When you’re caring for someone.
- All our free tools.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor, nurse, hematologist or person living with sickle cell disease has reviewed it. The facts were read on October 7, 2026 on the website of the National Heart, Lung, and Blood Institute, part of the National Institutes of Health (nhlbi.nih.gov: its sickle cell disease pages on what it is, causes and risk factors, symptoms, diagnosis, sickle cell trait, treatment, how it may affect your health, living with it, and pregnancy and reproduction), in English and in Spanish. The page says whose words it is passing on, and what is marked “ours” is our own. What we left out or did not read: how long people with sickle cell disease live, the death rates NHLBI gives for transplants, amounts of any medicine, what any treatment costs or what insurance, Medicaid or Medicare pays, any state’s programs, and any helpline (we found no phone line on the pages we read, so we give none). NHLBI’s treatment page still says four medicines are approved while also noting that one, voxelotor, was withdrawn in 2024; we name the three that remain. We also opened the Centers for Disease Control and Prevention’s sickle cell pages, but nothing here is taken from them. We called no number. It saves nothing and loads no tracking.