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Treat Responsibly Today for a Healthy Tomorrow

As the primary manager of your health, you decide how you’re going to approach living with a bleeding disorder.

You can let the bleeding disorder control your life or you can practice responsible treatment strategies to help minimize its impact on your daily life.

This section of Step Up focuses on how you can responsibly treat your bleeding disorder to help ensure a healthy future. It covers:

The Importance of Preventive Treatment

Healthy living with a bleeding disorder involves more than treating bleeds promptly and adequately. Many individuals practice a routine of preventive treatment, called prophylactic therapy. Regular prophylaxis (called prophy for short) decreases your chances of having spontaneous bleeds. By keeping enough factor in your system on a regular basis, you can help prevent bleeds and thereby help prevent joint and tissue damage. If you have trouble sticking to your prophylactic therapy routine, talk to your Hemophilia Treatment Center (HTC) team. They can suggest ways to simplify your prophy routine to accommodate your lifestyle and help you stay on schedule.

Now is the time to set up a schedule for prophylactic therapy and resolve to stick to it.

Here are some tips for effective prophylactic therapy:

  • Self-infuse factor in the morning to ensure that you’ll have optimal levels of factor in your blood during your entire day.
  • Inform your health care provider about any changes in your bleeding disorder.
  • Take your medication as prescribed, and make sure you don’t run out.

And, of course, know the signs and symptoms of a bleed so that you can treat quickly and appropriately if you do get injured.

To review the signs and symptoms of a bleeds, go to Identifying Different Types of Bleeds.

Treating your bleeding disorder responsibly is one way to help ensure you remain as healthy as possible. Keeping healthy will benefit you as well as your loved ones. One day you may have children of your own or loved ones who are dependent on you for care—be it short term or long term. This dependence could even become life-long. To remain at peak physical health so you can properly help your loved ones, you’ll need to stay on top of your personal health care and be sure to stick to your prophylaxis routine.

Maintaining Good Joint Health

Your bleeding disorder can have a negative effect on the health of your joints. Prompt and adequate treatment of bleeds and regular exercise can help minimize joint damage due to bleeding and improve your quality of life.

Here are the steps you can take to help maintain good joint health:

Treat Your Bleeds Promptly

Treating your bleeds is not just about the treatment itself, it is also about how quickly you treat once a bleeding episode begins. Delayed treatment of joint bleeds may result in damaged joints. Joint damage can cause your joints to permanently freeze, which means you will not be able to fully flex or extend your limbs.

Treat bleeds within 1 hour of onset to minimize joint and muscle damage.

Exercise Regularly and Eat Healthy

Staying active and controlling your weight are 2 good ways to help keep your joints healthy. The more weight you carry, the more strain you place on your joints, increasing the chances of a bleed.

Regular exercise (eg, 30 minutes a day) can help prevent bleeds by strengthening and stabilizing your joints and muscles.

Improve Your Quality of Life

While no one can guarantee you a life free of health problems, preventive treatment, in addition to prompt treatment, will enhance your quality of life. Several studies have found that prophylactic therapy decreases bleeding episodes, and increases the quality of life in adults with hemophilia.

Good Record Keeping Is Good for Your Health

Keeping good medical records of your bleeding disorder is not just the responsibility of your Hemophilia Treatment Center (HTC) team. It’s important that you also keep a detailed account of your bleeds and treatment. With information about the number and location of your bleeds, your HTC team can individualize your care to better suit your unique health needs.

Keeping an infusion log of your bleeds and treatments will help your health care team help you.

Here are a few suggestions to help you keep track of your bleeds and treatments:

  • Enter information about your bleeds into a spreadsheet or a calendar.
  • Use a computer program to track your bleeds.
  • Write the date and time of your bleeds and subsequent treatment on the ripped-off tops of your factor boxes.
  • Download an infusion log program onto a smart phone or other mobile device
    • For example, Hemolog, an infusion-logging program, is available through the iTunes® store and can be downloaded to a smartphone.

Pain Is Common With Bleeding Disorders

Unfortunately, pain is one of the most common characteristics of a bleeding episode. In general, types of pain that people with bleeding disorders experience are:

  • Acute pain. Acute pain is short-term pain. People with bleeding disorders usually experience acute pain when they have bleeding into a joint or muscle. You can also have acute pain after surgery.
  • Chronic pain, also called persistent pain. Persistent pain is long-term pain. You may feel some discomfort all the time or have pain that continues after an injury has healed. This is usually caused by arthritis or joint disease caused by repeated bleeds into the joints.

Although no objective diagnostic tests can measure pain, tools such as a visual pain scale can be used to help patients quantify their pain. For example, one type of visual pain scale allows patients to rate their pain on a scale of 1 to 10, with 1 meaning relatively no pain and 10 meaning maximum pain.

Pain can cause stress and fatigue in people with bleeding disorders. Pain can disrupt your life. It can keep you from having fun with family and friends, learning in school, being effective at your job, 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.

Understanding how pain can affect every part of your life, including physically, emotionally, academically, and socially, will help you to identify when you need to ask for help managing the effects of pain.

Pain Checklist

The following questions may help determine if pain caused by your bleeding disorder is influencing your daily life. Ask your health care provider or HTC team for help if you feel that your pain is disrupting your daily life.


  • Are you often unable to participate in your favorite activities?
  • Do you have difficulty sleeping?
  • Do you have to stay home or in bed?
  • Have you lost your appetite?
  • Have you recently experienced a change in your mobility?
    • Are you using crutches or a wheelchair?


  • Are you often upset, short-tempered, or easily irritated by minor issues?
  • Do you cry easily—sometimes not even knowing why? Do you generally feel sad or overwhelmed?
  • Do you feel hopeless or like no one understands how you feel?


  • Are you falling behind in school?
  • Are you having trouble concentrating in class or on your assignments?
  • Do you need to take frequent breaks while doing your assignments?


  • Do you often have to cancel your plans with friends?
  • Are you often alone?
  • Have you isolated yourself from friends and family?

For a print out, go to Pain Checklist.

Pain Management

Pain is the body’s way of telling you that you need extra care, rest, and possibly treatment. Untreated or inadequately treated pain can lead to serious consequences for patients, as well as for your peers, partners, and other caregivers. The best way to avoid long-term damage (physically, emotionally, academically, and socially) is to pay attention to your body and respond to your pain with appropriate treatment. Fortunately, many approaches are available to help reduce the pain associated with bleeding disorders. Your hemophilia health care team will teach you the what, when, why, and how of confidently managing your bleeding disorder to avoid as much pain as possible.

Do not ignore your pain. Do not delay in asking for help.

The primary goals of pain control are to relieve suffering and to maintain daily functioning. Pain can be managed through 3 main types of care: physical, pharmacologic (with medications), and psychological.

Physical Pain Management

The physical approach to pain management for bleeding disorders includes:

  • The R.I.C.E. (Rest, Ice, Compress, Elevate) technique
    • Rest the injured area.
    • Ice the injured area.
    • Compress bandages on the injured area.
    • Elevate
  • Immobilizing the injured limb (eg, using a splint, crutches, pillows)
  • Physical therapy to help return limbs to normal functioning after a bleed, and reduce the risk of loss of muscle (called atrophy) or joint motion
For more information, go to R.I.C.E.

Pharmacologic Pain Management

The pharmacologic management of pain associated with bleeding disorders includes a range of options, from over-the-counter (OTC) products, including acetaminophen (Tylenol®), to narcotics, which must be prescribed and monitored by a doctor. People with bleeding disorders should not take aspirin, which can interfere with blood clotting. They also should not use certain nonsteroidal anti-inflammatory drugs (NSAIDs) (eg, ibuprofen and naproxen) because they can also interfere with the blood’s ability to clot. Because bleeding disorders can lead to chronic pain, your doctors will need to closely monitor your use of prescribed narcotics to reduce the risk of addiction.

Psychological Pain Management

The psychological management of pain can be categorized under complementary and alternative medicine (CAM) approaches. CAM includes a broad range of methods such as mind-body techniques and natural products. In general, CAM techniques have not yet been accepted as valid therapy by the mainstream medical community. However, this view may gradually change as more research is performed and more scientific evidence of the effectiveness of some CAM methods is demonstrated. In addition, some CAM approaches are used in combination with traditional medical approaches.

CAM approaches to pain management include a wide range of methods, including simple measures such as distraction techniques, deep breathing, or guided imagery.

Main Types of Complementary and Alternative Medicine
Type Examples
Alternative Medical Systems
  • Acupuncture
  • Ayurveda
  • Homeopathy
  • Naturopathy
  • Traditional Chinese medicine
Mind-Body Interventions
  • Art, music, or dance therapy
  • Biofeedback
  • Humor therapy
  • Meditation
  • Patient support groups
  • Prayer
Biologically Based Methods
  • Natural substances, such as herbs, foods, and vitamins
Body-based Methods
  • Chiropractic
  • Massage
  • Osteopathy
  • Reflexology
Energy Therapies
  • Qigong
  • Reiki
  • Therapeutic touch

Remember to check with your health care provider before beginning any alternative therapy. This is especially important when considering taking any herbal remedy. Many herbs can be toxic, adversely interact with other medications, and directly affect the blood’s ability to clot.

Learning ways to control your pain will help improve your quality of life. Prophylactic therapy is the most effective way to reduce the risk of a bleed and the pain it causes. But despite prophylaxis, a breakthrough bleed may still occur. Having an organized strategy to help limit and control the pain from a bleed is important, as is a plan to manage any longer-term pain from repeated bleeds.