If you’ve been told that you or your child has sickle cell trait or sickle cell disease, you may wonder what those terms really mean. They sound similar, but sickle cell trait isn’t the same as having sickle cell disease.

Here’s what you should know about the difference if you or someone in your family has been diagnosed with either sickle cell trait or sickle cell disease.

What Is Sickle Cell Trait?

Sickle cell trait means you have two versions of the gene that helps make hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen throughout the body.

🗳️ Have you or your child been told you have sickle cell trait?

I have sickle cell trait.

My child has sickle cell trait.

My child and I both have sickle cell trait.

I haven’t been tested for sickle cell trait.

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If you have sickle cell trait, you inherited one gene that makes typical hemoglobin (hemoglobin A) and one sickle cell gene that makes sickle hemoglobin (hemoglobin S).

A person with sickle cell trait makes both types of hemoglobin. Most of the time, their red blood cells keep their normal shape. Most people with sickle cell trait don’t have the symptoms of sickle cell disease.

Is Sickle Cell Trait Dangerous?

Under certain extreme conditions, such as severe dehydration or intense exercise, some people with sickle cell trait can develop rare complications.

Complications may include kidney problems, which can cause blood in the urine. Rarely, a serious breakdown of muscle tissue called rhabdomyolysis can happen.

Most people with sickle cell trait can exercise regularly. Staying well hydrated, taking breaks during intense activity, and not doing too much too fast can help lower the risk of problems.

It’s also important to know that someone with sickle cell trait can pass on the sickle cell gene to their children. Depending on the other parent’s genes, a child could have sickle cell trait or sickle cell disease. We’ll discuss this in more depth below.

What Is Sickle Cell Disease?

Sickle cell disease happens when you inherit two genes that make an abnormal type of hemoglobin, including at least one sickle cell gene. As a result, some of your red blood cells can become stiff and sickle-shaped.

Normal red blood cells are soft, round, and flexible. They can easily move through small blood vessels. Sickled red blood cells can become stiff and sticky, and they may clump and block blood flow.

What Are the Effects of Sickle Cell Disease?

Sickle cell disease can cause ongoing health problems, which can become severe or even life-threatening. Symptoms and complications can include:

Sickle cell disease is a lifelong condition. However, appropriate medical care and treatment can help people with sickle cell disease live longer, healthier lives.

People with sickle cell disease can also pass a gene for abnormal hemoglobin to their children.

Why Does Knowing Your Sickle Cell Trait Status Matter?

Adults with sickle cell trait may feel completely healthy. Without genetic testing, they might not realize they have the trait. However, knowing your status can be especially important if you’re thinking about having children.

If you have sickle cell trait, your child’s other biological parent may also want to be tested. Knowing both parents’ hemoglobin status can help you understand the chances of passing sickle cell trait or sickle cell disease to your children.

A genetic counselor or other qualified healthcare professional can explain your specific results and discuss options for having children. This is especially helpful if your partner has sickle cell trait, sickle cell disease, or another blood disorder involving abnormal hemoglobin.

Knowing your status can also help you share accurate information with family members who may want to be tested. Close relatives can learn whether testing may be helpful for them.

What’s Involved in Caring for Sickle Cell Disease?

People with sickle cell disease need ongoing medical care, even when they feel well. Regular appointments allow healthcare professionals to check for organ damage and other potential problems.

Treatment depends on the person’s type of sickle cell disease, age, symptoms, and overall health. Medications and blood transfusions may be used to treat or prevent certain complications.

Some people with sickle cell disease take hydroxyurea, which can help prevent pain episodes and other complications. Other treatments may also be considered, including bone marrow transplants and gene therapy.

Caring for a child with sickle cell disease usually means more doctor appointments and more attention to their health and well-being. They may have more sick days home from school.

The experience can be different for every family. Your child’s symptoms and healthcare needs may be different from those of other people with sickle cell disease.

What Should Adults With Sickle Cell Trait Know?

If you have sickle cell trait, you generally don’t need the same ongoing treatment as someone with sickle cell disease. Most people with the trait don’t have everyday symptoms.

Still, it’s important to tell healthcare professionals that you have sickle cell trait. This may be especially important before some medical procedures or when taking part in very intense physical activity.

Seek medical attention if you feel sick during exercise or notice blood in your urine. Blood in the urine should always be checked to find the cause rather than assumed to be from sickle cell trait.

What if Your Child Has Sickle Cell Disease and You Have the Trait?

Parents and caregivers sometimes discover that they have sickle cell trait after their child is diagnosed with sickle cell disease. Learning that you have the trait can bring up questions about your child’s diagnosis and future children.

Having the trait doesn’t mean you caused your child’s disease. Sickle cell disease results from the combination of hemoglobin genes a child inherits from both parents.

Your child’s healthcare team can explain the specific genes involved and what they mean for your child’s health. If you’re considering another pregnancy, genetic counseling can help you understand the chances of having another child with sickle cell disease.