If you have a bleeding disorder, it's important to know that treatment options have significantly improved over the past several decades. Thanks to these advances, people with bleeding disorders can now live long, healthy, active, and fulfilling lives.
As you transition into adulthood, it's important to take an active role in managing your own care. Learning to communicate openly with your health care provider, taking medication as prescribed, and adhering to the treatment plan can help you develop the skills you need to maintain your health and well-being.
This section of Staying on Treatment covers:
Your Role
To successfully manage your blood or bleeding disorder, it’s critical to recognize your responsibility to be your own health advocate. Your Hemophilia Treatment Center (HTC) team and health care providers will discuss their expert opinions about treatment options for you. However, you are responsible for the final decisions about your health needs and following your treatment plan. While you are at your HTC, ask questions about your treatment. Make sure that you understand how often and when to treat before you leave your appointment.
If you want more information about Hemophilia Treatment Centers, please go to Hemophilia Treatment Centers.
Impacts of Delaying Treatment
Treating bleeds early is very important, but what happens if you delay your treatment? There are many ways your body and health can be affected by delaying treatment when you have a bleed:
Many people with bleeding experience joint bleeds throughout their lives. When a bleed occurs in the joints (called hemarthrosis), it can cause damage that can have long-term effects, including:
Cartilage Damage: Joints are lined with a strong, flexible connective tissue called cartilage. Cartilage helps your joints to absorb shock and decrease friction. Frequent bleeds can break down the cartilage. This can cause increased friction between the bones. Increased friction can cause pain, impact mobility, and ultimately will lead to damage and deformity of the bones
Arthropathy: Repetitive bleeding episodes into the joints will lead to damage (called hemarthropathy). This can even occur in young people with bleeding disorders. Hemarthropathy may take a toll on your physical and emotional health. It can cause pain, deformity, and loss of function.
Permanent damage to your joints can prevent you from doing what you want and need to do. You may not be able to walk without pain. In some cases, you may need to use assistive devices, such as crutches or a wheelchair. Limited mobility can make your day-to-day activities difficult. This can include attending school, playing sports, and doing activities with your friends and family.
If you want more information about joint protection, please go to Joint Protection.
Acute pain is short-term pain. People with bleeding disorders usually experience acute pain when they have bleeding into a joint or muscle.
Pain becomes chronic when it lasts longer than 3 months and affects your daily life. Damage to the joints caused by repetitive joint bleeds can result in chronic pain, even in young people. It’s important to manage pain early to prevent chronic effects.
Chronic pain, limited mobility, and an impaired lifestyle can increase your susceptibility to mental health and emotional problems, including anxiety and depression. If you want more information about mental health issues and how to manage these, please go to Emotional Health.
Without prompt treatment, extra blood can pool in the joint or soft tissue and cause pain and swelling that takes longer to go away. The longer it takes for a bleed to heal, the longer it will be before you can get back to your routine and the activities you enjoy.
With prompt treatment, a bleed can likely be managed without a trip to the emergency room or your HTC. However, if treatment is delayed and the bleeding becomes more serious, you may need to see a health care provider. This can result in extra medical bills for you and can require you to take time away from other important things, such as school or work.
Joint damage, pain, and longer recovery periods can disrupt your life. It can cause stress and fatigue. It can keep you from having fun with family and friends, learning in school or working, participating in sports or activities you enjoy, and getting a good night’s sleep. It can have an emotional, financial, academic, and spiritual impact on everyone involved and can lead to feelings of helplessness and hopelessness.
Causes of Poor Adherence
Most people with bleeding disorders lead busy, active lives. This can make following a treatment plan difficult. If you have a mild bleeding disorder, you may find treatment even more challenging. In fact, people with mild hemophilia, for example, have been found to be significantly less likely to treat a bleeding episode.
Lack of adherence is a common pattern seen in people with chronic medical conditions that don’t always have a visible impact on daily health (such as high blood pressure, high cholesterol, or depression).
The most common reasons for poor adherence to treatment in individuals with bleeding disorders are:
- A decrease, change, or disappearance of symptoms
- Forgetting treatment
- Lack of time for treatment
- Inconvenience of treatment
- Lack of understanding of the long-term impact of delaying treatment on your health
Improving Adherence
Regardless of the severity or type of bleeding disorder you have, you should remember that decisions you make today can have a big impact on how your bleeding disorder affects you in the future. This is true regardless of your age or current health. Preventing bleeds and treating bleeds quickly and correctly is critical to protecting your health.
If you find that it's difficult to adhere to your treatment plan for any reason, talk with your health care provider or HTC team as soon as possible. Together, you will create a treatment plan that will work for you.
Some topics you should discuss with your HTC team:
- Recognizing signs and symptoms of bleeds.
- Understanding your treatment protocol.
- Changing the frequency of treatment.
- Changing the time of day that you give yourself your treatment.
- Keeping a treatment log.
- Identifying ways to remind yourself when it's time for your treatment.
- Keeping enough medication and supplies available for treatment.
When you adhere to your treatment plan, you're making an important choice. You're choosing to take charge of your bleeding disorder so that you can protect your health over the long term.
If you want more information about talking to your health care provider, please go to Talking to Your Health Care Provider.