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Living with a diagnosis of hemophilia B can be difficult. You may feel a flood of emotions, like anger, denial, and guilt that you or your child have been impacted, or you might feel nothing at all. You may feel unprepared to make the lifestyle changes needed to keep you safe and may struggle adjusting to your new routine.
Whatever you may be feeling, just know that the rollercoaster of emotions is natural and expected. This article will discuss the mental, physical, and emotional factors that you may experience after a diagnosis of hemophilia B and some ways that you can cope.
Even if you have a family history of hemophilia, hearing the diagnosis of hemophilia B can be a shock. Learning how to manage a bleeding episode, being told that you cannot play certain sports, navigating school issues, and setting up school and workplace accommodations can be understandably overwhelming.
It’s not uncommon for people to experience a low mood, struggles with medication compliance, and some anxiety as they adjust to these new changes. These feelings are normal, to be expected, and not indicative of a separate problem.
It’s natural to have good and bad days, but if you are feeling off, it’s important that you address your concerns. Focus on self-care during these times, and if you continue to feel down, seek out the help of a mental health professional.
If you receive care at a hemophilia treatment center (HTC), a social worker can perform a mental health evaluation to see if you have a diagnosable mental health condition. Counseling sessions are often free and available to both you and your immediate family or caregivers.
Sometimes the mental and emotional toll of hemophilia B can trigger anxiety and depression. These feelings can be temporary or last for a while. If left untreated, these and other mental health conditions can interfere with regular life activities, including work and school and maintaining relationships.
Mental health struggles may also affect your physical health, negatively impacting nutrition, sleep, the desire to exercise, and the ability to stick to a treatment regimen—all factors that are important aspects of bleeding prevention and disease management.
If you are experiencing one or more of the following symptoms, you may be depressed and may want to call a friend or seek immediate medical attention:
- Constant fatigue and lack of energy
- Not enjoying activities that usually make you happy
- Feelings of sadness, tearfulness, emptiness, or hopelessness
- Angry outbursts, irritability or frustration, even over small matters
- Loss of interest or pleasure in most or all normal activities, such as sex, hobbies, or sports
- Sleeping too little or too much
- Changes to your appetite, which may include reduced appetite and weight loss or increased cravings for food and weight gain
- Anxiety, agitation, or restlessness
- Slowed thinking, speaking, or body movements
- Feelings of worthlessness or guilt, fixating on past failures or self-blame
- Trouble thinking, concentrating, making decisions, and remembering things
- Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts, or suicide
- Unexplained physical problems, such as back pain or headaches
Remember that you are not alone and do not have to suffer in silence. Talking to family and friends and seeking out the help of local, national, and even international support organizations may help you cope with your symptoms or bring up your spirit on those not-so-good days.
Being mindful of potentially dangerous situations that can cause injury, exercise, and eating a healthy diet can help keep the body strong and reduce your risk of bleeding episodes.
Exercise is important for everyone—it decreases the risk of diabetes, high blood pressure, high levels of fat in the blood, obesity, osteoporosis, and related fractures. But it’s especially important if you have hemophilia because regular physical activity can help protect the joints from the damaging effects of bleeding episodes, reduce joint pain, and improve the effectiveness of treatments.
Designing an exercise plan with the help of a physical therapist or another healthcare professional with experience working with hemophilia patients can ensure the program you adopt is safe and effective for your specific condition.
You may also want to make the following lifestyle changes to decrease your bleeding risk:
- Avoid dangerous or risky situations that may lead to injury
- Live an active lifestyle. Regular physical activity improves joint, bone, and muscle health.
- Engage in non-contact sports like swimming and biking and routine exercise to keep your weight down and help your body prevent bleeds. Contact sports like football and rugby should be avoided.
Physical therapy is also critical in reducing the impact of bleeding into joint spaces, as internal bleeding can cause significant damage to the joints.
One of the key things to remember during your hemophilia journey is that you are not alone. There are many resources, including support groups via the National Hemophilia Foundation, that can connect you to local chapters that can provide education, support, and a way to connect to people who understand your experience.
Also joining a patient advocacy organization, an online hemophilia support community, or simply talking to friends, going for a jog, or reading a good book can put your mind at ease especially in the days and weeks after receiving your diagnosis.
Accessing the resources you need often comes down to what's available in your area and whether you can find age-appropriate options like summer camps for children and community wellness events for adults that address the psychosocial challenges of living with a bleeding disorder.
As you get older and become more independent, you may find that you are taking on more responsibility for managing your hemophilia, from financial planning to learning to administer your medication injections to setting up accommodations at work and school.
Using an app that helps you manage your everyday tasks, including when to take medication, may be helpful. You may also want to learn where to get medical supplies, who to go to for treatment, and what to do in case of an emergency. Taking the following steps may help you create an efficient way to manage your hemophilia:
- Know the names and locations of the nearest hemophilia treatment centers (HTCs).
- Take a copy of all prescriptions and labels that identify your medicine.
- Check your health insurance for travel restrictions.
- Bring medical ID in case of an emergency.
- Take medicine with you and keep it close if you need it.
- Tell a friend about your hemophilia and what they should do in the case of an emergency.
Living with hemophilia B and its complications can be challenging, but with treatment, you can prevent bleeding symptoms and learn how to adequately manage them when they do occur. In addition, exercise and eating a healthy diet play an integral role in ensuring overall good health and may maximize the efficacy of your treatments.