life and diagnosis Hemophilia B It can be difficult. You may feel a torrent of emotions, such as anger, denial, and guilt that you or your child has been affected, or you may feel nothing at all. You may feel unprepared to change your lifestyle to keep you safe, and it may be difficult to adjust to your new routine.
No matter how you feel, just know that the emotional roller coaster is natural and expected. This article will discuss the mental, physical, and emotional factors you may experience after a diagnosis of hemophilia B, and some of the ways you can deal with it.
Even if you have a family history of hemophilia, hearing a diagnosis of hemophilia B can be shocking. Learning how to deal with bleeding events, being told you can’t play certain sports, addressing school issues, and setting up school and workplace accommodation is understandable.
It’s not uncommon for people to experience low mood, struggle with medication adherence, and some anxiety as they adjust to these new changes. These feelings are normal, to be expected, and do not indicate separate problems.
It’s natural to have good days and bad days, but if you’re in a bad mood, it’s important to address your concerns. Focus on self-care during this time and seek help from a mental health professional if you continue to feel depressed.
If you are receiving care at a hemophilia treatment center (HTC), a social worker can perform a mental health assessment to see if you have a diagnosable mental health condition. Counselling sessions are usually free and available to you and your immediate family or carers.
Sometimes, the mental and emotional loss of hemophilia B can cause anxiety and depression. These feelings may be temporary or they may last for a while. If left untreated, these and other mental health conditions can interfere with normal life activities, including work and school and maintaining relationships.
Mental health problems can also affect your physical health, negatively impacting nutrition, sleep, desire to exercise, and the ability to stick to your treatment regimen—all important aspects of bleeding prevention and disease management.
If you experience one or more of the following symptoms, you may feel depressed and may want to call a friend or seek immediate medical attention:
- persistent fatigue and lack of energy
- Dislike activities that usually make you happy
- feelings of sadness, tears, emptiness, or hopelessness
- angry outbursts, irritability, or frustration, even over small things
- Loss of interest or pleasure in most or all normal activities, such as sex, hobbies, or sports
- sleep too little or too much
- Appetite changes, which may include decreased 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, focusing on past failures or self-blame
- Difficulty thinking, concentrating, making decisions, and remembering things
- Frequent or recurring thoughts about death, suicidal thoughts, suicide attempts, or suicide
- unexplained physical problems, such as back pain or headaches
Remember, you are not alone and do not have to suffer in silence. Talking to family and friends and seeking help from local, national, or even international support groups may help you cope with symptoms or pick yourself up on those not-so-good days.
What is a support group?
Be aware of potentially dangerous situations that can lead to injury, exercise, and a healthy diet to help keep your body strong and reduce your risk of bleeding.
Exercise is important for everyone – it reduces the risk of diabetes, high blood pressure, high blood fat, obesity, osteoporosis and related fractures. However, this is especially important if you have hemophilia, as regular physical activity can help protect your joints from the devastating effects of bleeding events, reduce joint pain, and improve treatment outcomes.
Designing an exercise program with the help of a physical therapist or other health care professional with experience working with people with hemophilia can ensure that the program you adopt is safe and effective for your specific situation.
You may also need to make the following lifestyle changes to reduce your risk of bleeding:
- Avoid hazards or dangerous situations that could result in injury
- Live an active lifestyle. Regular physical activity can improve joint, bone, and muscle health.
- Participate in non-contact sports such as swimming, cycling, and regular exercise to lose weight and help your body prevent bleeding. Contact sports such as football and rugby should be avoided.
Physical therapy is also important to reduce the impact of joint space bleeding, as internal bleeding can cause severe damage to the joints.
Dangerous and safe exercise options for children with hemophilia
One of the key things to remember on your hemophilia journey is that you are not alone. There are many resources, including through the National Hemophilia Foundation’s Support Group, that can connect you with local chapters that can provide education, support, and ways to connect with people who understand your experience.
Joining a patient advocacy group, an online hemophilia support community, or just talking to a friend, jogging, or reading a good book can give you peace of mind, especially in the days and weeks after your diagnosis.
Access to the resources you need often depends on what’s available in your area and whether you can find age-appropriate options, such as summer camps for children and community health events for adults, to address the psychosocial challenges of living with bleeding disorders.
As you age and become more independent, you may find that you take on more responsibility for managing your hemophilia, from financial planning to learning to manage your medication injections to arranging accommodation at work and school.
It may be helpful to use an app that helps you manage your daily tasks, including when to take your medicine. You may also want to know where to get medical supplies, who to call for treatment, and what to do in an emergency. Taking the following steps can help you create an effective approach to managing your hemophilia:
- Find out the name and location of the nearest Hemophilia Treatment Center (HTC).
- Make copies of all prescriptions and labels that identify your medicines.
- Check your health insurance for travel restrictions.
- Bring medical documents with you in case you need them.
- Carry your medication with you and keep it with you when you need it.
- Tell friends about your hemophilia and what they should do in 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 occur. Additionally, exercise and a healthy diet play an integral role in ensuring overall health and can maximize the effectiveness of your treatment.