Coping With Hemophilia A

Giving Yourself the Self-Care You Deserve

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Hemophilia A, a condition in which you are prone to bleeding and have difficulty clotting, can have a substantial impact on your life and your family. This condition requires long-term treatment, and sometimes the treatment can be complicated, especially if you develop inhibitors (your immune system works against the treatment).

In addition to getting medical treatment, you also can get help managing your feelings about your condition, staying safe, and with family planning. This article will discuss how to cope and live well with hemophilia A.

Tips for Minimizing Your Risks with Hemophilia A

Verywell / Jessica Olah

Emotional 

Living with hemophilia A means that you must limit some of your activities to avoid injuries that could lead to bleeding. This can make you feel sad, anxious, or angry. It is completely normal to have these feelings.

You might have times in your life when you feel more emotional distress or less emotional distress about your condition, and your range of feelings is normal, too. There are different ways to manage your feelings, and some might be right for you at various times in your life. 

Strategies include:

  • Meeting with a qualified therapist 
  • Joining a support group so you can talk to other people who have bleeding disorders
  • Talking to a friend or family member 
  • Working on projects that promote hemophilia A support, awareness, or advocacy
  • Learning about your condition 
  • Meditation 

You might feel that one or more of these suits your personality and needs. If you try a strategy and it isn’t working for you, consider trying a different one. 

Physical 

It’s important that you take care of your health so you can minimize the risks and effects of hemophilia A. Medical treatment is an important aspect of managing the physical effects of your condition, and there are other things you need to do to take care of your body. 

Physical considerations include: 

  • Safety: Avoiding injuries that could cause internal bleeding or open wounds is vital. This means not participating in contact sports, high-impact sports, or activities with a high risk of injury. Activities, sports, and exercises you can do include swimming, running, jogging, Pilates, yoga, golf, tennis, dance, and more. 
  • Safety gear: Sometimes protective equipment can help prevent injuries during certain activities. These types of shields can include helmets, knee pads, elbow pads, or other protection. 
  • Exercise: Staying active is an important way to maintain physical strength, balance, and flexibility. Strength and balance can reduce your risk of injuries, and joint flexibility is especially important because hemophilia A can cause joint damage due to bleeding
  • Healthy diet: A well-balanced diet can help optimize your body’s functions, preventing other causes of bleeding, such as vitamin deficiencies.
  • A plan for managing bleeding at home: It is likely that you could have occasional minor injuries. Discuss a plan with your doctor so you will know how to prevent excess bleeding. Strategies like using an ice pack if you become injured can help. Also, be sure to cover wounds to prevent infections. 
  • Recognizing emergencies: While most injuries are likely to be mild, you can experience serious injuries. Discuss a plan with your doctor and with your family members so you will know when to get help and whom to call. Severe bleeding can cause organ damage and can be life-threatening.

Social 

With concerns about injuries and having frequent medical visits, you might feel alone and unable to participate in social events. This can be a feature of your life at any age, but it can be especially difficult for children who are living with hemophilia A.

There are things you can do to help build and maintain social connections with others so you will have the healthy and enjoyable interactions you need and crave. 

Things to consider:

Decide how much you want to share about your condition: Sometimes you might want to explain what you are going through to certain friends, classmates, or colleagues. And sometimes you might want to keep your health issues to yourself. It’s OK to share sometimes but not other times. It all depends on what feels right for you.

Find activities you can enjoy: You might feel somewhat left out of certain groups, such as an athletic team, when you can’t participate in their activity. Consider developing group hobbies that are safe for hemophilia A and that don’t have an inherent risk of bleeding.

For children, this might include swimming, dance, choir, theater, art, debate, music, and many more options. For adults, this can include things like golf, bowling, yoga, and more. 

Independence for children: If your child has hemophilia A, it’s normal for you to be protective. Your child also needs to learn how to be confident and to become independent as they learn to manage their health and their life.

Empower them to learn about their treatment. Remember to be supportive if they face issues such as feeling left out. You can help them build the self-assurance they need to thrive throughout life.

Practical

There are several important issues you need to pay attention to if you have hemophilia A. 

Family Planning 

The implications of hemophilia A for your potential offspring are important to consider. If you have the hereditary form of hemophilia A, you could have a child with the condition. There are varying levels of severity, and you or your child might have a mild, moderate, or severe form.

It’s important to discuss the risks with your partner so you can decide about genetic testing and family planning together. There may also be risks associated with pregnancy and childbirth, so discuss these with your physician.

Time Off From School or Work 

You might have many medical appointments for your treatment or for physical therapy. It can take a good deal of planning to work out the timing of your medical care along with your other obligations and your social life and hobbies. Be patient with yourself as you balance all these different things in your life. 

If you need a flexible schedule, consider enrolling in some online courses instead of taking all your classes in person. And think about finding a career that gives you flexibility so you can achieve everything you want and take good care of your health. 

Summary

Living with hemophilia A involves reducing your injury risk, having a plan for managing injuries, acknowledging your emotions, and maintaining social connections despite the limitations you may have on your activities.

Additionally, genetic testing might be important for you and your family. You might need accommodations as you balance your illness with everything else you want to do in your life.

A Word From Verywell

Living with hemophilia A is about more than getting medical care. You and your family may have many concerns about how your condition affects your life. Reach out for help and take advantage of the resources available to you so you can live your best life with hemophilia A.

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3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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