Living with hemophilia

Last updated Sept. 23, 2025, by Mary Chapman
Fact-checked by Joana Carvalho, PhD

Daily living

Thanks to advances in its treatment, many people living with hemophilia — a condition that causes prolonged bleeding due to blood clotting issues — can live almost normal lives.

No matter your type — hemophilia A, hemophilia B, hemophilia C, or acquired hemophilia — there are ways to manage it effectively.

Staying active, eating well, having proper health insurance, and accessing the right support and resources can help you live well with the disease.

How hemophilia affects daily living

How hemophilia affects you depends on your symptoms, the type of hemophilia you have, and whether it’s mild, moderate, or severe.

The main sign of hemophilia is excessive and prolonged bleeding. Even a small cut or injury can turn into a serious emergency.

Other symptoms that can affect daily life include:

frequent, unexplained nosebleeds
heavy bleeding after any procedure that punctures the skin (such as shots or dental work)
joint bleeding, which is more common in severe cases
muscle bleeding, affecting 10% to 20% of people with hemophilia

In some cases, internal bleeding can happen, leading to:

stomach pain, swelling, or tenderness
chest pain or trouble breathing
blood in the stool, urine, vomit, or when coughing

Certain activities — like intense contact sports — and some medications (such as blood thinners) can also increase the risk of bleeding.

Be mindful, but don’t dwell

These symptoms require people with hemophilia to be mindful of their daily tasks.

G Shellye Horowitz, who has hemophilia A, is a program coordinator at the University of Washington and a columnist for Hemophilia News Today. She says that while she doesn’t dwell on her disorder, she’s always mindful of it.

“I like to go hiking and do home improvement projects, but I’m a little bit of a klutz,” she says with a chuckle. “Thank goodness I have access to [hemophilia medication] and can self-treat.”

Horowitz went undiagnosed for years despite dealing with pain and bleeding. Since hemophilia mainly affects men, doctors assumed she was just a carrier, not someone with the disorder. Fortunately, she’s had fewer bleeding episodes in recent years.

Hemophilia treatment centers

Hemophilia treatment centers (HTCs) specialize in caring for people with bleeding disorders.

According to a 2020 study, people with bleeding disorders are consistently satisfied with the care they receive at HTCs in the U.S. Other studies show that those who receive care at a treatment center have a 40% lower mortality rate and are less likely to be hospitalized for bleeding complications.

The benefits of treatment at an HTC generally include:

comprehensive care
reduced risk of complications
access to treatments
emergency care coordination
specialized physical therapy
education and support
insurance and financial assistance

Family planning, pregnancy, and childbirth

While there are different causes of hemophilia, it is most commonly inherited from a person’s biological parents.

Understanding whether they are carriers is essential for women who want to become pregnant. Carriers have a 50% chance of passing hemophilia to their children, which can make pregnancy and delivery more complex.

Horowitz, whose father had hemophilia, understands this challenge firsthand. After careful thought, she chose adoption as the right path for her. “I could’ve died without a proper plan,” she says. “I’m glad I was naturally predisposed to adopting.”

If you have hemophilia or carry the gene, it’s important to learn about:

the impact of inherited hemophilia on children
available treatments and where to find specialized care
how to manage pregnancy, labor, and delivery to reduce risks
options for conception, prenatal diagnosis, and determining the baby’s gender

Making informed decisions can help ensure the best possible outcome for both you and your future children.

Exercise

Excessive bleeding, a common hemophilia symptom, can cause joint damage, making exercise harder for people with the disorder.

Fortunately, a physical therapist can create a hemophilia exercise program that caters to your interests and needs. Physical therapy can help people with hemophilia stay active safely by:

increasing bone and joint health
strengthening muscles
improving cardiovascular health
increasing flexibility, balance, and coordination
increasing bone mineral density
helping manage chronic pain
maintaining a healthy body weight
boosting mental health and confidence

While contact sports are not recommended, many other activities are considered safe and beneficial, including:

swimming
golf
walking and hiking
cycling
tai chi
archery
snorkeling

Horowitz, for example, dances at least an hour daily, does aerobics, and uses a recumbent bike. Still, she’s careful because, in addition to hemophilia, she has osteopenia, a loss of bone density. “That can complicate things,” she says. “If I end up falling, I run the risk of a break and bleeds.”

Diet and nutrition

A proper diet is important for everyone, especially those with chronic conditions like hemophilia. While eating healthy won’t cure the disorder, it plays a key role in managing your overall health.

For example, eating iron-rich foods after a bleeding episode can help the body produce red blood cells. Some good food sources of iron include:

lean red meat
fish
liver
poultry
leafy green vegetables
tofu
legumes
grains

Vitamin K, found in foods like sauerkraut, leafy greens, and vegetable oils, is also helpful because it supports blood clotting.

To support bone health, foods rich in calcium, such as sugar-free yogurt, skim milk, and reduced-fat cheese, should also be a part of a hemophilia diet. Other nutrients, such as zinc and vitamins A, C, and E, can help promote tissue repair and wound healing.

However, before making any changes to your diet, make sure you consult with your healthcare provider.

Foods to avoid

People with hemophilia should avoid foods that could increase the risk of bleeding or contribute to weight gain, which can be hard on the joints. These include:

high-fat foods
processed foods
foods high in sugar

It’s also wise to avoid ginger, garlic, and fish oil supplements, as they may increase the risk of bleeding.

Self-care considerations

It’s important to practice self-care in addition to regular checkups, following your treatment plan, and keeping your healthcare team updated on your condition.

Self-care can include:

doing low-impact exercises like walking or swimming
brushing and flossing your teeth regularly
avoiding contact sports
not lifting heavy objects that can stress your joints
wearing protective gear, like helmets and pads, when needed
using relaxation techniques, such as meditation or mindfulness, to manage stress
eating a healthy diet with few sugars and unhealthy fats
being careful with household tasks to avoid cuts or bruises
ensuring you have access to healthcare and any needed hemophilia medicines when traveling

Health insurance and financial considerations

The primary treatment for hemophilia involves clotting factor infusions. However, these medications are costly.

For someone with severe hemophilia, the average annual cost of treatment can be around $300,000, and not all insurance plans fully cover it. You’ll usually need to pay a copay out of pocket for clotting factor medications.

People with hemophilia often face high deductibles and coinsurance, which means they pay part of the costs instead of a fixed copay. This can make it hard to plan for healthcare expenses each year.

In addition to direct treatment costs, indirect expenses include transportation to care centers, lodging, and medical supplies such as bandages or mobility aids.

It’s important to know what treatments your insurance covers, any coverage limits, and whether there are restrictions or waiting periods.

To help you choose the right insurance, the National Bleeding Disorders Foundation offers a Personal Health Insurance Toolkit.

The Hemophilia Federation of America also offers financial aid programs that can help cover basic living expenses.

Useful resources and support

Living with a chronic condition like hemophilia can be hard on your mental health, leading to feelings of depression or anxiety.

Connecting with hemophilia support groups can provide a sense of community, where others understand what you’re going through, helping you cope with hemophilia healthily.

Horowitz seconds this sentiment, saying her community connections have helped her maintain a positive attitude.

“Dealing with a lifelong disorder, there are always issues that come up,” she says. “But we are a very tight-knit community, and I have friends with hemophilia all over the country.”

If you’re looking for a support group, consider reaching out to these organizations:

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.