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Changing Roles in Treatment


Although your parents can help you make good choices in your life, you're now able to make some decisions on your own. You pick out your own clothes, choose your friends, and have your favorite music. Now it's time to make some decisions about your own health care.

Learning to make good choices about your health care is an important step that everyone must make when growing up and becoming independent. This is especially true for someone with a bleeding disorder. Remember: your parents and Hemophilia Treatment Center (HTC) team are always available to answer your questions, and you can learn a lot by attending events at your local hemophilia chapter and at camps for kids with bleeding disorders.

This section of Next Step will cover:

Taking Control of Your Own Care

As you get older, you’ll want to rely less on your parents and others and take more control of your care.

Click on the tabs below for the important basics you should know about your bleeding disorder as you take the next step toward independence.

Know Your Diagnosis

You should be able to identify:

  • Your type of bleeding disorder.
  • Your level of severity: mild, moderate, or severe.
  • Your clotting factor level.
  • If you have an inhibitor.

Know Your Medicines

You should know:

  • The brand of factor you use.
  • Your weight.
  • How much factor you use (called dosage).
  • When you need to take factor or medication.
  • How you take your factor or medication, including steps of self-infusion.
  • Why you take your factor or medication.
  • What to do if you have an allergic reaction.
For more information, go to Self-Infusion.

Know How to Recognize a Bleed

A joint or muscle bleed might look or feel:

  • Tingly
  • Bubbly
  • Achy
  • Warm or burning
  • Crampy
  • Swollen
  • Stiff
  • Squishy

Know Your Medical Needs

You should be able to:

  • Recognize a bleed and treat it right away.
  • Tell someone immediately if you have pain or a bleed.
  • Know when you should go to the emergency room (ER).
    • Always call your HTC before you go to the ER.
    • Know emergency telephone numbers, including the number to your Hemophilia Treatment Center (HTC).
  • Talk to your HTC team during medical visits.
    • Ask questions about your bleeding disorder.
    • Remember to wear your medical alert bracelet at all times.
    • Remember the type of health insurance you have.

Start Taking Care of Yourself Today!

Now is a good time to talk to your family about taking more responsibility for your own health care. Remember: your parents are more likely to give you more privileges when you show that you are more responsible.

Here are some suggestions on how you can start taking care of your health:

  • Know what medicines you take.
  • Know when to take medications.
  • Know how much of the medicine to take (called dosage).
  • Order medication and supplies when more are needed.
  • Schedule appointments with doctors.
  • Tell your health care team how you feel.
  • Answer your health care team's questions.
  • Take notes at your medical appointments.
  • Remember what the doctor says.
  • Learn how to self-infuse.
  • Keep a treatment journal.
  • Learn more about bleeding disorders through sources such as your Hemophilia Treatment Center (HTC), local hemophilia chapter, books, and, of course, Steps for Living!.

How Treatment Changes During Puberty

During puberty, your body changes and grows very fast. Did you know that the amount of factor you take will change as you grow? Your Hemophilia Treatment Center (HTC) will help you and your parents figure out how much factor is right for your body. Also, ask your HTC any questions you have about changes in your body. They're always there to help.

A Word With the Girls

Managing a heavy period can be very stressful. Talk to your HTC team and gynecologist about ways to reduce heavy menstrual bleeding (called menorrhagia) and how to deal with cramps and pain.

Here are some suggested products and treatment options you can discuss with your health care team:

  • When super-absorbent tampons and panty liners aren't sufficient, light bladder leakage products are ideal for heavy periods. These can be used with super-absorbent tampons. Many brands are very discreet and come in a variety of different absorbencies and sizes for a proper fit.
  • Combined oral contraceptives.
  • Desmopressin acetate (DDAVP) injection or nasal spray.
  • Antifibrinolytic drugs, which help slow or prevent the breakdown of blood clots. They are either injected or taken orally.
  • Factor replacement therapy, for more severe bleeding or if you aren't doing well with DDAVP.
To learn how other girls have dealt with heavy periods, go to Tips and Tricks for Coping With Heavy Periods.

If you have painful cramps, ask your doctor what type of pain medicine would be right for you. Some over-the-counter medicines affect blood clotting. These include aspirin and some nonsteroidal anti-inflammatory drugs, including ibuprofen and naproxen.

Try exercising—particularly aerobic exercises, such as brisk walking, swimming, or biking, which all raise the heart rate. These types of exercise help in two ways: they release beta-endorphins, the body's own natural pain relievers, and they reduce stress hormones.

If you're feeling weak and tired, this may be caused by anemia. When your body does not have enough iron, it will make fewer red blood cells or red blood cells that are too small. This is called iron deficiency anemia. Iron deficiency anemia is the most common type of anemia in US teens. A person can have a low iron level because of blood loss. In women, iron and red blood cells are lost when bleeding occurs from very heavy and long periods, as well as from childbirth.

Tell your parents and your doctor how you feel. Your doctor may need to do a simple blood test to check for anemia. You may need to change your diet to include more iron-rich foods or start taking vitamins.

If your heavy periods are keeping you from enjoying the activities you love or preventing you from going to talk to your doctor about helpful treatments. Your parents can speak to your teachers and school nurse about your bleeding disorder and the challenges you face each month. They can work with the school staff to get you an unrestricted bathroom pass so you can regularly change your pad/tampon. This can greatly relieve the worry of heavy blood flow staining your clothes. If you think it's necessary, your parents can talk with your physical education teacher about skipping or modifying certain activities when you have your period.

Signs of Anemia

Anemia takes time to develop. In the beginning, you may not have any signs or the signs may be mild. However, as the anemia worsens, the signs and symptoms may become more noticeable.

Here are some signs and symptoms of anemia:

  • Fatigue (very common)
  • Weakness (very common)
  • Dizziness
  • Headache
  • Numbness or coldness in your hands and feet
  • Low body temperature
  • Pale skin (called pallor)
  • Rapid or irregular heartbeat
  • Shortness of breath
  • Chest pain
  • Irritability
  • Not doing well in school or at work