✔ Backed by: Centers for Disease Control and Prevention (CDC) · National Institutes of Health (NIH) · HealthCare.gov. Each fact links to its source, and the full list is at the bottom of this post.
Imagine it is 2 a.m. A young man with sickle cell disease is curled up on the couch. The pain started in his back and legs hours ago, and nothing he has tried at home is helping. He knows he should go to the ER. But he hesitates. Last time, he waited for hours and felt like no one believed how much it hurt. “Maybe it will ease up,” he tells himself.
If you live with sickle cell, or love someone who does, that hesitation may feel very familiar. September is Sickle Cell Awareness Month. So let’s talk honestly about the emergencies, the everyday care, and how to speak up. Think of it as two friends at the kitchen table.
What sickle cell is, in plain words
It is an inherited blood disorder. Red blood cells become hard and shaped like a crescent, or “sickle.” They can get stuck and block blood flow [1]. As a result, that blocked flow causes many of the painful and dangerous problems.
It is inherited. A child gets it when they receive two copies of the gene, one from each parent [1]. So you cannot catch it from someone. In the U.S., it is often found at birth through routine newborn screening [1]. The disease can affect people from many backgrounds. Not sure of your own status or your child’s? Ask your clinician how to find out.
Know the sickle cell emergencies
Back to that 2 a.m. moment. Pain crises are real, and some signs mean you should not wait. Get emergency care right away for:
- Fever of 101°F (38.3°C) or higher
- Severe pain that does not get better with home treatment
- Chest pain or trouble breathing
- Sudden weakness, numbness, trouble speaking, or a severe headache (signs of stroke)
- A painful erection that will not go away
- Sudden belly swelling or a very pale, tired child [2]
Many people living with it try to tough it out at home. Some have been made to feel like they were “overreacting” or not believed. That is painful in its own way. But your pain is real, and these signs are serious. Going to the ER for them is not being dramatic. It is the right call.
Making the ER visit go smoother
You can’t control everything about an ER visit. But a few things can help a lot. Ask your care team for a written pain and emergency plan. Bring it, plus your usual blood count, to every ER visit. Bring a list of every medicine you take, plus any allergies. Have your specialist’s name and phone number ready, and ask the emergency team to contact them.
If you can, bring a support person. They can speak up for you when you are in pain. Here is how that might sound:
You or your support person: “I have sickle cell disease and I’m in a pain crisis. Here is my emergency plan from my hematologist. Can you call my specialist? Their number is on the plan.”
If you feel brushed off: “I know my body, and this is not my usual pain. I’d like you to look at my plan, please. Can I speak with the charge nurse?”
Calm, clear words and a written plan can change how a visit goes. After the visit, tell your specialist what happened so your plan can be updated. What has helped you feel heard in an emergency room?
Everyday care that helps prevent problems
Between emergencies, small daily habits matter. Many care teams suggest drinking plenty of water and avoiding getting too hot or too cold. Keep vaccines up to date, including the flu vaccine every year. This matters for both children and adults. Wash your hands often with soap and clean water, and prepare food safely. Try to avoid high altitudes and places with low oxygen [5].
Some checks matter even when you feel well. Children need regular brain blood-flow scans (TCD) at certain ages to check stroke risk [2]. Starting at age 10, see an eye doctor every year to check for damage to the retina [5]. And keep regular visits with your care team, even on good days. It is tempting to skip checkups when you feel fine. Which of these is hardest for you to keep up with?
Treatments are growing
There is real reason for hope. Treatments include hydroxyurea, other medicines, blood transfusions, and bone marrow transplant. Gene therapies have also been approved for some people [3]. So ask your hematologist which options fit you.
A good place to start might be: “Are there newer treatments I should know about? What would the benefits and risks be for me?”
Some treatments may need approval from your health plan before you get them. Before starting a new treatment, ask your care team and your plan what is covered and what you will pay. A hospital social worker can also help you find support programs. Is cost the worry? Medicaid and CHIP offer free or low-cost health coverage to eligible low-income adults, families, and children. Rules vary by state. You can apply any time of year, either through the Health Insurance Marketplace or directly through your state Medicaid agency [6].
Trait vs. disease: a family talk
Many people mix up sickle cell trait and sickle cell disease. They are not the same. People with the trait usually do not have the disease, but they can pass the gene to their children. Ask about testing before starting a family [4].
That can be a tender talk with a partner. You might try:
You: “Before we think about kids, would you be open to both of us getting tested for sickle cell trait?”
Your partner: “Do we really need to? I feel fine.”
You: “Feeling fine is normal with the trait. It’s not about worry. It’s just so we can plan with all the facts.”
For parents and caregivers
If your child has sickle cell, school can feel like a big unknown. Share your child’s emergency plan with the school nurse, teachers, and coaches. Ask the school to allow a water bottle, bathroom breaks, and a warm layer in class. Keep a working thermometer at home, and know your child’s fever plan. Keep up with your child’s brain blood-flow scans and vaccines [2]. In the teen years, start talking with the care team about moving to adult care, so there is no gap.
Care for your mind, too
Living with pain and frequent hospital visits can be draining. It is normal to feel stressed, sad, or worn out. Ask your care team about counseling or a support group. If you feel hopeless or think about harming yourself, call or text 988 any time. In an emergency, call 911. Reaching out is a sign of strength.
Let’s talk
Now it’s your turn. We would love to hear from you in the comments below.
If you live with sickle cell, what has helped you feel heard and believed in the ER?
Parents: how have you worked with your child’s school to keep them safe and included?
How did you start the trait-testing talk with a partner or family member? What words helped?
One Tru Step: Ask your specialist for a one-page emergency care letter and keep it on your phone.
Sources and further reading
- CDC: About Sickle Cell Disease
- CDC: Complications of Sickle Cell Disease
- NHLBI: Sickle Cell Disease
- NHLBI: Sickle Cell Trait
- CDC: Prevention and Treatment of Sickle Cell Disease Complications
- HealthCare.gov: Medicaid & CHIP Coverage
Sources checked October 10, 2026. General education; individual care and coverage questions require an appropriate professional.
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