Hemophilia Information/Diagnosis and Testing

Newly Diagnosed With Hemophilia: Next Steps

Medically reviewed by Fatima Sharif, MBBS, FCPS

Written by Emily Van Devender

Updated on June 26, 2026

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Key Takeaways

A hemophilia diagnosis can bring up many questions, but most people with the condition have a normal life expectancy and can safely take part in most activities.

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After you or your child is diagnosed with hemophilia, dozens of questions can come up. While you may need to make some changes to your routine, a bleeding disorder doesn’t have to upend your life. In fact, most people with hemophilia have a normal life expectancy and can safely participate in most activities.

Despite the positive outlook, your mind might race about the unknowns. Here, we offer a quick overview of things to know with a new hemophilia diagnosis, along with the next steps to take.

Gaining a Better Understanding of Hemophilia

Knowing more about hemophilia can give you some direction after getting a new diagnosis.

Hemophilia is a genetic condition that prevents blood from clotting normally. This means that a person with hemophilia bleeds more easily than someone without it. This happens because they lack natural proteins called clotting factors in their blood.

There are two main types of inherited hemophilia:

Hemophilia A (or classic hemophilia) is more common and involves low levels of clotting factor VIII (8).
Hemophilia B (also called Christmas disease) is less common and involves low levels of clotting factor IX (9).

Steps in the Diagnostic Process

Getting a hemophilia diagnosis involves sharing your personal and family medical history. Your doctor will also perform a physical exam before moving on to more in-depth testing.

Blood Tests for Hemophilia

Multiple blood tests can tell the care team more about what’s in your blood and how it functions. Blood tests for diagnosing and learning about hemophilia include:

Complete blood count (CBC) — Checks the levels of different blood cells, including platelets, to rule out a low platelet count as the cause of excessive bleeding
Tests for clotting factor levels
Tests to see how quickly your blood clots
Mixing studies — Rechecking how quickly your blood clots with certain clotting factors added

Your healthcare providers might also suggest genetic testing. This can identify genes that cause hemophilia A or B. Girls and women in your family may also consider being tested for those genes to find out if they’re carriers of hemophilia, according to Children’s Hospital of Philadelphia.

Checking for Inhibitors

Genetic tests can tell you about your or your child’s risk of developing inhibitors. These are antibodies that prevent certain hemophilia treatments from working well.

Inhibitor blood tests can tell you if inhibitors are currently in your blood. This information can help guide treatment decisions.

Why Early Treatment Matters

After a hemophilia diagnosis, you’ll want to start treatment as soon as possible. Early treatment is important for preventing hemophilia complications later in life. These may include arthritis and other permanent joint damage.

Building Your Hemophilia Care Team

Comprehensive care for hemophilia starts with a team of specialists who understand this disease. Visiting a hemophilia treatment center (HTC) near you is a great first step in finding a care team. Otherwise, your primary care provider can make referrals to specialists.

A hemophilia care team guides decisions about treatment and answers your questions. It usually includes:

Hematologist — A doctor who specializes in managing bleeding disorders
Physical therapist — A specialist who can help guide your child’s growth and development while preventing joint and muscle complications
Psychiatric care professionals — Counselors or psychologists who can help you or your child cope with a hemophilia diagnosis and life changes
Nurses who specialize in hemophilia — Medical experts who can provide care and education about hemophilia

What To Expect While Living With Hemophilia

Heavy and uncontrollable bleeding can occur regularly in people with hemophilia. Bleeding occurs more often the more severe your hemophilia is.

Bleeding can be visible when it occurs outside your body. But it may be a little harder to detect when it’s internal.

Common Signs of Hemophilia Bleeding

It’s important to identify the common signs of bleeding. Look out for hemophilia bleeding symptoms such as:

Bruising on the skin, which indicates internal bleeding under the skin
Swelling and discoloration, which can be signs of bleeding in the muscles
Frequent nosebleeds
Frequent bleeding from the gums
Joint pain or trouble moving a joint, which are signs of a joint bleed
Altered consciousness or intellectual or behavioral changes, which can indicate a brain bleed
Presence of blood in vomit or stool, indicating a bleed in the gastrointestinal tract
Unexplained or relentless crying, which could be an infant’s way of telling you they’re in pain

Some hemophilia bleeding has an obvious cause, like an injury or recent surgery. In other cases, hemophilia bleeding is spontaneous, and there isn’t a clear cause.

Signs of a Hemophilia Emergency

Some hemophilia bleeding can be life-threatening or cause permanent problems. That’s why emergency care is necessary in some cases. Seek emergency care if you notice signs such as:

Neurological changes, such as vision loss, altered consciousness, or behavior change
Nonstop or uncontrollable bleeding after an injury
Extremely swollen, hot, and painful joints

Next Steps After a Diagnosis

Developing an action plan can help you feel more in control after a hemophilia diagnosis.

Considering Treatment Options

Hemophilia treatment can involve two types of treatment: prophylactic treatments and on-demand treatments. Prophylactic treatments may help prevent excessive bleeding and the complications it can cause. For instance, this may include getting regular clotting factor infusions.

On-demand treatments aim to help control bleeding when it occurs. This may involve infusing clotting factors as bleeding is happening, before it can cause permanent damage.

Always talk to your hemophilia care team about medications that may or may not be safe. For example, avoid nonsteroidal anti-inflammatory drugs (NSAIDs) unless your care team allows you to take them.

Steps for Injury and Bleeding Prevention

A bleeding disorder can make some activities a little riskier. That’s because injuries can lead to excessive bleeding. Take the following steps to reduce the risk of injuries that cause bleeding in joints and elsewhere:

Avoiding activities that are more likely to cause injuries, like contact sports
Managing your weight to minimize pressure on joints
Practicing good dental hygiene to prevent gum bleeding
Doing physical therapy to build muscle strength
Getting vaccines under your skin instead of in the muscle
Building a hemophilia emergency kit to keep on hand for unexpected bleeds

Planning for Medical Care

Some medical care, including surgery or dental procedures, can be riskier for people with hemophilia due to the higher risk of bleeding. Check in with your care team before any upcoming procedures. They might recommend more factor replacement infusions for you or your child as a precaution.

Getting a Medical ID

A medical ID tells others that you or your child has a bleeding disorder. That way, first responders and others know what to do in case of an emergency. Consider getting a medical ID for you or your child once you have a diagnosis.

Connecting With Others

Connecting with the hemophilia community can help you and your family feel less alone. Talk with others on MyHemophiliaTeam or look into local or online support groups for people with bleeding disorders. You might also find connections through hemophilia foundations.

Talk to Your Doctor

If you or your child is newly diagnosed with hemophilia, talk to your doctor about steps you can take to be proactive about your health. Your doctor can make referrals, help with treatment recommendations, and answer your questions about hemophilia and available treatments.