New to Sickle Cell and Thalassemia? Start Here
Sickle Cell and Thalassemia: the few things that matter most, and the mistakes that catch people out early.
Inherited conditions affecting the structure or production of hemoglobin.
Key takeaways
- Screening: part of newborn screening in every state, and offered in pregnancy
- Carrier status (trait): usually causes no symptoms but matters for family planning
- Most useful single change: Accept prenatal and newborn screening.
- Commonest mistake: Assuming carrier status has no implications for your children.
- See a doctor if any of the signs under "When to speak to a doctor" below apply to you.
Why bother
Every US state screens newborns for sickle cell disease, and carrier status matters for family planning.
Start here
These two first. Everything else is easier once they are habit.
- Accept prenatal and newborn screening
- Ask about carrier testing if it runs in your family or ancestry
Then add these
Next, once the first two have stopped feeling like effort.
- Keep warm and well hydrated if you have sickle cell disease
- Keep vaccines up to date; infection risk is higher
The numbers, in one place
| Measure | Figure |
|---|---|
| Screening | part of newborn screening in every state, and offered in pregnancy |
| Carrier status (trait) | usually causes no symptoms but matters for family planning |
| Sickle cell pain crisis | severe pain, often triggered by cold, dehydration or infection |
| More common in people with ancestry from | Africa, the Caribbean, Latin America, the Mediterranean, the Middle East and South Asia |
| A1C | can be unreliable in some hemoglobin disorders |
Common early mistakes
- Assuming carrier status has no implications for your children
- Dehydration and sudden temperature changes in sickle cell disease
- Delaying care during a painful episode
Related topics
- Cancer and Family History: What Published Guidance Supports (Cancer Awareness)
- What the Guidance Really Says About HbA1c (Diabetes)
- What the Guidance Really Says About Cardiovascular Risk (Heart Health)
- Body Mass Index: Sorting the Evidence From the Noise (Weight Management)
Where to go next
- What Sickle Cell and Thalassemia Is, and Why It Matters
- The Sickle Cell and Thalassemia Checklist: What to Do and What to Skip
- Sickle Cell and Thalassemia — the reference entry
- Blood Health: The Complete Guide
- What the Guidance Really Says About High Platelet and White Cell Counts
- Bruising and Bleeding: Sorting the Evidence From the Noise
When to speak to a doctor
In sickle cell disease, call your doctor or hematology team the same day for any fever, because of infection risk, and get prompt care for severe pain not controlled at home. Call 911 or go to the emergency room for chest pain, trouble breathing, sudden weakness or numbness, confusion, a painful erection that will not go away, or sudden abdominal swelling.
Where this comes from
- CDC — Sickle Cell Disease
- National Heart, Lung, and Blood Institute — Sickle Cell Disease
- National Heart, Lung, and Blood Institute — Thalassemia
How this page was put together
Every figure, recommendation and warning above is taken from the guidance named in Where this comes from. Nothing on this page is inferred, summarized or generalized beyond what those bodies publish: where they give a number, it is their number, and where they are silent, so are we. Pages are rebuilt whenever the underlying record changes. Sign-off by a named clinician, where it has happened, is shown at the top of the page along with the date.
Medical disclaimer
This article is general information, not medical advice. It cannot account for your own history, medication or circumstances. Always speak to your doctor, pharmacist or another qualified health professional before making changes that affect your treatment, and never delay seeking medical advice because of something you have read here. In an emergency, call 911.
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