Bleeding may be the defining symptom of hemophilia, but it isn’t always the only sign that something is wrong. For many people, symptoms like joint pain, swelling, bruising, and even depression can affect daily life — sometimes in ways that are easy to overlook or dismiss.

We surveyed MyHemophiliaTeam members about their symptoms and found that many with hemophilia experience other symptoms, such as depression and pain.

Here’s what you need to understand about the lesser-known symptoms of hemophilia.

Why Pain Can Be a Symptom of Hemophilia

Bleeding in the joints, which accounts for 70 percent to 80 percent of all bleeding incidents for people with severe hemophilia, can cause long-term pain. In fact, 57 percent of people who responded to our survey reported experiencing pain as part of their condition.

However, only 38 percent of respondents were satisfied with the way their ongoing pain was being addressed by their care team. One member even reported that they have ongoing pain that is “at least a 10 on the standard pain charts.”

Here are some reasons why hemophilia can cause pain.

Ongoing Bleeding

Some chronic pain can be caused by ongoing bleeding into a joint. This can then cause inflammation of your synovitis (joint lining), which makes additional bleeding more likely.

What’s more, the pain from blood collecting in your joint may cause you to keep your arm or leg bent in a more comfortable position. Over time, keeping your limb bent can make it harder for you to move your arm or leg out of this position — and if you try to move it, it can be painful.

Other signs of joint bleeds can include:

• Warmth
• Swelling
• Stiffness
• Reduced range of motion

Pay attention to your symptoms and where it hurts. Then, let your hematologist or another healthcare provider know about any limitations on movement, the size of your bruising, and how your body is responding to treatment.

Damaged Cartilage

As your joint bleeding continues to happen, you can also experience damage in the cartilage. This can eventually cause hemophilic arthropathy, which is a type of joint disease caused by repeated bleeding.

This cartilage and joint damage can also impact your bone health and lead to chronic pain and a lower quality of life. In fact, some researchers estimate that about two-thirds of people with severe hemophilia experience pain in one or more joints daily.

Risk of Arthritis

Developing arthritis is one of the most common complications — and causes of pain — for people with severe hemophilia. It can develop when joint bleeding is not treated appropriately or when joint bleeding is ongoing.

Over time, repeated bleeding in a joint can lead to inflammation, cartilage damage, and changes in the bones and surrounding tissues. Nearby muscles can also experience deconditioning from not being used.

The result can be chronic, disabling pain that’s accompanied by achy and stiff joints and decreased flexibility.

Common Mental Health Symptoms of Hemophilia

When you have hemophilia, bleeds, pain, potential accidents, infusions, and stigma can all be sources of stress. Just about every aspect of your life can be impacted by hemophilia, including your relationships and your overall well-being.

These ongoing stressors can eventually lead to depression or anxiety, especially if mental health isn’t addressed. In our survey, 65 percent of people who responded reported experiencing depression along with their hemophilia. However, only 13 percent of them felt satisfied that their depression was being addressed by their medical team.

Anxiety or depression can make it harder to act quickly during a bleeding emergency, such as calling your care team, using your treatment plan, or going to the emergency room. Because of this, it’s important to be aware of the emotional impact of hemophilia and seek support from a mental health professional if needed.

Why Fatigue Plays a Role in Hemophilia

When you’re fatigued, you usually feel chronically drained or exhausted. Not only does fatigue make it hard to get up in the morning, but it can also make it hard to get through the day or meet your obligations. You may also feel an overwhelming need to sleep and yet don’t feel rested after.

Although fatigue is not a documented symptom of hemophilia, it’s still a very real side effect of the condition. Dealing with chronic pain and mental health issues on a daily basis can be exhausting and is frequently linked to fatigue.

The lack of sleep that comes with the stress of having a chronic condition can also play a role. Even anemia, which is a very real risk for people who have ongoing blood loss, can cause a person with hemophilia to experience fatigue.

Mild Hemophilia Symptoms That Can Be Missed

It’s also possible to have a mild form of hemophilia. In these situations, you may not even realize you have the condition until later in life when you have dental surgery or experience an injury.

Not realizing you have hemophilia can put you at risk because you may not get the treatment you need until something traumatic happens.

Here are some symptoms of milder presentations of hemophilia that you should be aware of:

• Easy or unusual bruising
• Prolonged bleeding after dental procedures, tooth extractions, or surgeries
• Nosebleeds that are hard to stop
• Heavy bleeding during menstrual cycles
• Hemorrhage or extensive bleeding after childbirth

Left unaddressed, mild hemophilia can negatively impact your quality of life. If you haven’t already been diagnosed with hemophilia and you notice prolonged bleeding after seeing the dentist, giving birth, or having a period, talk to your healthcare provider.

When To Get Urgent Care for Hemophilia Symptoms

When you have hemophilia, there are some bleeding episodes that you can manage at home; but there are others that require urgent medical care. The key is being able to tell the difference between a severe bleed and a regular one.

The first step is recognizing five of the most sensitive sites in your body, where bleeding is a cause for concern and should be treated as an emergency. These five areas include your head, neck or throat, your eyes, your abdomen, and your kidney or bladder.

Type of Dangerous Bleeding	Symptoms To Watch For
Intracranial (head) bleeding	Prolonged headaches, dizziness, vomiting, dilated pupils, slurred speech, confusion, sensitivity to light
Neck or throat bleeding	Difficulty swallowing, labored breathing, choking, coughing up blood, vomiting blood, voice changes
Abdominal bleeding	Distended (abnormally swollen) stomach, firm abdomen, weakness, paleness, bloody or black stool, coughing up blood
Ocular (eye bleeding)	Double vision, blurred vision, pain moving eye, reddish eyes
Kidney or bladder bleeding	Lower back pain, frequent urination, pain when urinating, and pink, red, or brown urine

If you believe you’re bleeding in any of these five areas, take factor concentrate, call your hemophilia treatment center, and go to the emergency room.

Join the Conversation

On MyHemophiliaTeam people share their experiences with hemophilia, get advice, and find support from others who understand.

If you’ve been diagnosed with hemophilia, what symptoms do you experience outside of bleeding? Let others know in the comments below.