Living with hemophilia, or caring for a child with the condition, can be challenging, even with the most positive outlook. It’s natural to experience moments of feeling overwhelmed, frustrated, or down when managing a chronic condition. Remember, you’re not alone — there are resources, communities, and strategies available to help you navigate life with hemophilia.

No matter if you or your child has mild, moderate, or severe hemophilia, practicing the right self-care can make a significant difference. The following tips are designed to help you maintain your mental health, improve your quality of life, and enhance your overall sense of well-being.

1. Connect With a Hemophilia Treatment Center

Connecting with a hemophilia treatment center (HTC) in your area is one of the best ways to take care of yourself when living with hemophilia. These centers are staffed by a team of specialists, including doctors, nurses, physical therapists, psychologists, and social workers, who specialize in medical care for people with hemophilia. Regular checkups at an HTC ensure that you receive comprehensive and up-to-date hemophilia treatments treatment in a supportive environment — plus you’ll have a chance to connect with others with hemophilia.

There are many strategies to help people with hemophilia live better. The National Bleeding Disorders Foundation advocates for the THRIVE approach. According to the foundation, THRIVE stands for:

• Take advantage of regular care from health care providers focusing on bleeding disorders.
• Have a conversation with your health care provider about yearly inhibitor testing.
• Identify, treat, and fully heal bleeds.
• Value and make time for your emotional and mental health.
• Embrace your bleeding-disorders community and get involved.

The Centers for Disease Control and Prevention (CDC) has a searchable directory for finding HTCs throughout the U.S.

2. Look for Support

You may have hemophilia, but you don’t have to face it alone. Isolation can take a toll on your mental health, leaving you feeling lonely or misunderstood. Connecting with others who share similar experiences can make a world of difference.

If you’re a parent, try to create a supportive environment at home for your child or teen. Focus on the child you love rather than just the diagnosis, fostering a positive and nurturing atmosphere.

Both children and adults can benefit from spending time with others who also live with hemophilia, perhaps in an in-person or online support group. Local chapters of hemophilia organizations might also be good places to meet others who live with the condition, especially if you're looking more for friendship than psychological support.

3. Keep an Emergency Kit Ready

Having the necessary supplies on hand in case of a bleed can significantly reduce stress and provide peace of mind. Put together a hemophilia emergency kit that you can carry with you. It might be helpful to keep a small kit with you at all times and store extra supplies in your car for emergencies.

The contents of your hemophilia kit will depend on your treatment plan and personal preferences. You can start with a suggested list from resources like the Hemophilia Federation of America and customize it to fit your needs. You can also purchase hemophilia emergency kits online, though you should check to ensure they have all the supplies you might need.

4. Know Your First Aid

If you or your child live with hemophilia, understanding how to assess and manage bleeding episodes is crucial and can boost your confidence. It’s important to learn about the different types of bleeds and how to address each one. You should also be familiar with how to treat cuts or scrapes for someone with hemophilia, as this process differs from typical first aid. Additionally, knowing how to administer clotting factor at home is essential.

To learn more, check out resources from organizations like the Hemophilia Federation of America, the National Hemophilia Foundation, or Nemours KidsHealth.

5. Invest in Medical ID Jewelry

Choose a piece of medical ID jewelry that you or your child enjoys wearing. These items are often necklaces or bracelets but can also take other forms. These are pieces of jewelry that include your name and the fact that you’ve been diagnosed with hemophilia. If there’s ever an emergency and you can’t communicate, medical professionals will look for this kind of jewelry. It will help them know how to get you or your child the right care as soon as possible.

Alternatively, you can use the medical ID feature available on most smartphones. This feature allows you to store critical medical information that can be accessed from the lock screen, ensuring that first responders are aware of your condition and can act accordingly.

6. Get Regular Exercise

You can be safely physically active with hemophilia, as long as you can lower your risk of excessive bleeding. For instance, you may need to use factor before physical activity, or wear more protective gear, like elbow pads, than other people do. Your doctor may even tell you to do some extra stretching before you're active.

Your exercise may include exercises designed to protect your joints, muscle exercises, and a large variety of sports that are safer for people living with hemophilia (or can be modified). You might try:

• Biking
• Dancing
• Swimming
• Bowling
• Golf
• Yoga
• Pilates

Unless you have very mild hemophilia or have a plan in place with your hematologist, it’s best to avoid contact sports. If you’re not sure where to start, ask your hematology team about physical therapy for people living with hemophilia.

7. Eat Well

Eating well when you live with hemophilia may mean focusing on heart-healthy foods. Since managing any sort of heart or lung condition can be difficult when you’re also living with hemophilia, avoiding those complications can help you continue feeling healthy. This generally means eating more fruits, vegetables, whole grains, legumes, and lean protein, while avoiding processed foods and added sugars.

You can also talk to your doctor about any foods they think you should eat or avoid based on your hemophilia diagnosis, as well as recommendations for overall healthy living.

8. Manage Your Stress

Managing your stress can contribute to your overall well-being, including lowering your risk for heart disease. It may also reduce the number of bleeds you experience. Although the connection between stress and hemophilia is not fully understood, managing stress can help you feel better and improve your overall quality of life. It can relieve short-term symptoms like tense muscles, headaches, and trouble sleeping. Lower stress can also strengthen your immune system and support your mental health.

There are many strategies you can use to manage stress effectively, including practicing mindfulness, engaging in regular physical activity, and setting aside time for hobbies or relaxation. Taking control of even small aspects of your life can be empowering, which in turn can reduce overall stress. It’s important to engage directly with your stressors rather than setting them aside, as addressing them head-on can prevent them from intensifying over time. Additionally, helping others can offer perspective and lessen the feeling of being overwhelmed.

9. Take Care of Your Teeth

Dental care can be more complicated for people with hemophilia than it is for others. Dental treatments can cause bleeding, which can sometimes become severe. This can make you feel less motivated to care for your mouth, especially when you’re afraid you'll start bleeding. However, this may only cause more problems.

Instead, take care of your teeth regularly. The World Federation of Hemophilia recommends the following:

• Brush twice a day with a medium-bristled toothbrush.
• Clean between your teeth with floss, tape, and interdental brushes.
• Rinse with mouthwash that contains antibacterial and astringent ingredients.
• Limit your intake of sugary and acidic food and drinks.
• Visit your dentist at least twice a year.

While you won’t be able to avoid all bleeding, regular dental care is one of the best ways to minimize it when it comes to your dental hygiene.

Talk With Others Who Understand

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

What do you do to live well with hemophilia? Caregivers, how do you keep your child’s quality of life high? Share your experience in the comments below, or start a conversation by posting on your Activities page.