When you live with a bleeding disorder or a clotting disorder like von Willebrand disease (VWD), it can be hard to know if your symptoms are tied to that condition. If you’re experiencing fatigue, for example, you may wonder if the disease is behind it.

Here’s what you need to know if you or your loved one with VWD often feels tired. Remember, anytime you experience symptoms that are new or getting worse, you should talk with your health care provider to get medical advice or consider new treatment options.

What Is von Willebrand Disease?

With von Willebrand disease, blood doesn’t clot normally. This bleeding disorder is caused by inheriting a gene that affects your body’s production of von Willebrand factor (VWF), a protein that helps your blood clot. Depending on the particular gene you inherited, your body may not produce enough VWF or it may not do its job properly.

Without fully functional VWF, platelets — small cell fragments in your blood — don’t stick together the way they should when you’re bleeding. This can cause heavy or uncontrolled bleeding in situations in which the blood usually clots quickly. You may bleed heavily after small injuries, during nosebleeds or menstrual periods, or after routine dental procedures or surgeries.

Some people with VWD may also not make enough of another protein called factor VIII (factor 8 — Roman numerals are often used in discussions of clotting factors). This protein is also involved in blood clotting.

Research on another gene, the MTHFR gene, shows that people who have a mutated version and have been diagnosed with VWD may not bleed as much as those with a normal gene. More research is needed to confirm these findings.

How Can von Willebrand Disease Make You Tired?

Fatigue is one of the most common symptoms of anemia, a condition that can be caused by VWD. Being anemic means that you don’t have enough healthy red blood cells in your body. Red blood cells make hemoglobin, a substance that helps them carry oxygen around your whole body. You need to have enough iron for your cells to make hemoglobin.

When you bleed a lot, your body loses red blood cells, hemoglobin, and iron quickly. If it can’t replace what it has lost fast enough, your body won’t be able to get oxygen to all your tissues. This can lead to many symptoms, including:

• Significant tiredness or fatigue
• Chest pain
• Shortness of breath or feeling like you can’t get enough oxygen
• Chills
• Physical weakness
• Dizziness
• Bruises that occur easily
• Headaches
• Restless legs syndrome
• Trouble focusing or concentrating
• Pica (an abnormal craving for nonfood substances, like stone or chalk)

Anemia occurs with VWD if you bleed a lot over an extended period of time or regularly lose a lot of blood due to frequent bleeding episodes. If you can get the bleeding to stop and not restart, your body should be able to replace the red blood cells and hemoglobin you lost.

Most of the time, people who end up anemic because of VWD are those who lose a lot of blood during menstrual periods or after childbirth or who have type 3 VWD. Type 3 is the most serious form of the disease and can cause internal bleeding.

If you have been diagnosed with VWD and start feeling more tired than usual, it’s time to talk to your hematology team. They should assess you for anemia, and they may check you for internal bleeding if you can’t remember bleeding recently. Then they can help you find a treatment plan that will boost your energy levels and improve your quality of life.

Other Causes of Fatigue With von Willebrand Disease

Having von Willebrand disease doesn’t mean that every symptom you experience is connected to your diagnosis. Fatigue can have a lot of causes. You and your doctor may need to work together to figure out what is making you feel so tired.

People living with VWD may also experience other causes of fatigue, such as:

• Side effects from certain medications
• Drug or alcohol use
• Lack of good-quality sleep
• Too much or too little physical activity
• Poor diet

A wide range of other disorders, including sleep apnea, thyroid problems, heart disease, and mental health problems, can also cause fatigue.

Managing Fatigue With von Willebrand Disease

People who live with VWD can take a few approaches to reduce fatigue.

Try Medical Treatments

Medical treatment options for people with VWD include:

• Desmopressin (Stimate), a synthetic hormone that tells your body to make more VWF
• Birth control pills, which help reduce bleeding during menstruation
• Replacement therapies, which add clotting factor back into your blood
• Medications to stabilize clots, taken before surgery or dental work
• Drugs that can be applied to the skin to seal cuts

All of these can help control bleeding problems or make clotting easier. When you aren’t losing so much blood, your body should be able to produce the healthy red blood cells that it needs.

Supplement With Iron

If you’re taking steps to control VWD but still have anemia, getting more iron may help. Iron supplements can usually be taken as pills or given intravenously (through a vein). They may help you feel better while you and your doctor work to treat the root cause of your fatigue.

Consider Dietary Changes

Eating more foods that supply your body with iron may not help treat active anemia but might help protect you from developing it again. Iron-rich foods include:

• Certain vegetables (leafy greens, tomatoes, potatoes, and cabbage)
• Legumes (peas, beans, and tofu)
• Fruits such as dates, raisins, and figs
• Whole-grain bread and cereals
• Proteins (beef, poultry, fish, eggs, and seitan)

You may want to eat for better energy in general. Aim to choose foods with carbohydrates that are absorbed slowly instead of quickly. You might also change how much and how often you drink caffeine and alcohol, which can interfere with getting good-quality sleep.

Get Medical Advice

One of the best things you can do if you’re experiencing fatigue is to talk to your hematologist. They should be able to help you figure out what is causing your tiredness and find treatment options that will work in your situation. You may need to try a few approaches before you find one that helps you feel rested and ready to go every day.

Talk With Others Who Understand

On MyHemophiliaTeam, the social network for people with pulmonary hypertension and their loved ones, more than 6,000 members come together to ask questions, give advice, and share their stories with others who understand life with hemophilia.

Are you wondering if your tiredness stems from having von Willebrand disease? Have you found ways to regain your energy? Share your experience in the comments below, or start a conversation by posting on your Activities page.