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Activated prothrombin complex concentrates
Plasma-derived concentrates that contain many activated clotting factors. These activated clotting factors can overcome the inhibitor.

Acute pain
In hemophilia, pain which is caused by acute bleeding and not by a chronic joint disease such as arthritis.

The hormone released when your body experiences stress. Adrenaline causes a boost in energy.

Antifibrinolytic agents
Drugs that help hold a clot in place once it has formed by stopping the activity of an enzyme, called plasmin, which dissolves blood clots

Inflammation of the joint. In addition to inflammation of the synovial lining, there is also damage to the cartilage and bones of the joint surfaces. In hemophilia, arthritis is caused by repeated bleeding into the joint cavity.

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Bethesda assay
A test to measure the level of a clotting inhibitor once it is known to be present. The results of the test are given in Bethesda Units (BU).

Blood clotting
The process of forming a permanent clot to repair a damaged blood vessel. It includes four steps: vasoconstriction, platelet plug formation, and coagulation.

A plan that outlines the amount and the way you are going to spend money.

A monetary award that does not have to be repaid. It is given to individuals who have financial need.

Bypassing therapy
A treatment for patients with inhibitors. The factor concentrate that is infused contains clotting factors that work around the inhibitor.

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Chronic pain
In hemophilia, pain due to damaged tissues and/or altered brain and spinal cord functions and not an acute bleed.

Clotting cascade
The chain reaction that happens inside our blood to help stop a bleed. When a blood vessel wall breaks, tiny plasma proteins called clotting factors, link together to form a chain. This chain is called fibrin. Fibrin form around the platelets, which together ‘plug’ the bleed.

Complementary and alternative medicines (CAM)
Health care systems, practices, and products that are not a part of conventional medicine.

Comprehensive Care Team (CCT)
The group of health care professionals (doctors, nurses, physiotherapists, and social workers) who work together to help you manage your hemophilia.

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A substance that causes your body to expel more water than it needs to.

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The protective coating on your teeth. Enamel cannot be regenerated once it is destroyed, so it is important to take care of your teeth to keep your enamel strong.

A hormone released in the body that improves one's mood

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Factor replacement therapy
The treatment in which clotting factors are infused into the bloodstream of a person with hemophilia to replace those that are missing. It temporarily corrects the coagulation disorder.

The material making up the clot that forms in the last stage of the clotting process.

Fresh frozen plasma
A component of whole blood that was used for treatment of hemophilia in the 1950s and 1960s

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Tiny structures of DNA that determine such things as the colour of a person's eyes. Hemophilia is caused by an abnormal gene on the sex chromosome.

Genetic mutation
The specific mistake in the gene.

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Blood in the urine, caused by bleeding in the kidneys.

A substance in the red cells of blood, responsible for carrying oxygen.

Hemophilia A
A genetic disorder characterized by frequent bleeding into joints, muscles and tissues. The prolonged bleeding is caused by low levels of factor VIII (factor 8).

Hemophilia B
A genetic disorder characterized by frequent bleeding into joints, muscles and tissues. The prolonged bleeding is caused by low levels of factor IX (factor 9)

Hepatitis C
A viral disease that causes liver damage, which usually takes many years to develop. It is transmitted by the exchange of contaminated needles. In very rare cases it can still be transmitted by fresh blood components.

High-titer inhibitor
An inhibitor that is measured at more than 5 Bethesda Units. The antibodies of a person with a high-titer inhibitor are stronger and destroy the factor concentrate more quickly.

Home therapy
The care of the person with hemophilia at home, rather than in hospital. This includes the administration of clotting factor concentrates by the person with hemophilia or by a family member.

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Muscles located deep in the hips.

Immune tolerance therapy (ITT)
In ITT, high doses of the missing factor concentrates are infused. This is done three to seven times per week for very long periods of time (months or years). The therapy allows the body’s defenses to get used to the foreign factor and to stop making antibodies against it. This way, normal doses will be effective in stopping bleeding.

In Case of Emergency (ICE)
Store all your emergency contact numbers in an entry called ICE: In Case of Emergency. Many times, emergency personnel or hospital staff does not know who to call if a patient has a cell phone. Similar to 911, ICE is becoming a nationally recognized name.

An antibody that the body produces that recognizes infused clotting factor as foreign and prevents it from being effective/working properly.

Some people living with hemophilia produce a specific type of antibody, called inhibitors. They eliminate factor VIII or IX or other clotting factor proteins.

Intramuscular Injection
A vaccine that is injected deep into a muscle, usually in the upper-arm.

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A joint is the place where two bones come together, allowing movement such as bending, rotating and swinging back and forth.

Joint capsule
The joint space and the tissue membrane that forms a "sleeve" around the joint together form the joint capsule.

Joint disease
These diseases in hemophilia are caused by repeated bleeding into joints. They are most common in knees, ankles and elbows.

Joint replacement
The complete replacement of the joint cavity with synthetic materials. The joints most commonly replaced are the knee and the hip. However, the operations cannot be performed on young people as the materials used to replace the joint wear out.

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Low-titer inhibitor
An inhibitor that is measured at less than 5 Bethesda Units.

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Magnetic resonance imaging (MRI)
An MRI shows the internal structures inside your body in tremendous detail, including tiny structures like your veins, arteries and nerves.

A single section of the program. Each module includes information, videos, and animations about a topic. You will complete one module each week.

Muscle bleed
Bleeding into a muscle, which can be caused by a single serious trauma or small but repetitive trauma. A muscle bleed can happen if a muscle is strained or stretched too much.

MyHealth Passport
A wallet-sized card that includes all of your relevant health information. A health passport is an efficient way to communicate the details of your hemophilia to new health care providers.

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Non-steroidal anti-inflammatories (NSAIDS)
Medicines that are commonly prescribed for pain. However, NSAIDS interfere with hemophilia. When looking for medicines to treat pain, avoid taking NSAIDS.

Nutrition Facts Table
A label found on packaged food products that tells you the nutritional value in one serving (such as fats, carbohydrates, calories, sodium, and cholesterol).

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On-demand therapy
The care of the person with hemophilia at home, rather than in hospital. This includes the administration of clotting factor concentrates by the person with hemophilia or by a family member.

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Personal Health Coach
A trained member of the research team working on the Hemophilia Transition Study. The coach calls you once a week to discuss your progress, logs, and any difficulties or questions you may have during the program.

The use of exercise to stay fit or rehabilitate weakened muscles and damaged joints.

Plasma-derived factor
Factor that is collected from a large group of human blood donors.

Post-Secondary Education
The level of schooling that follows high school. University, college, and trade school are all forms of post-secondary education.

A central venous access device that is surgically implanted just under the skin. It allows easier infusion of clotting factor concentrates if access to the veins is more difficult.

A requirement one must fulfill.

Regular infusions of clotting factor concentrates, usually two to three times a week. This is done in order to prevent bleeding episodes from happening.

The muscles located on both sides of your lower spine. The psoas extends through your pelvic area to your hip joint, allowing you to freely move your hips.

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Radioactive synovectomy
An operation to shrink the synovium in a joint. A radioactive chemical is injected into the joint. The swollen synovium dies and is eventually replaced by a healthy one.

Release of Medical Records
A form that gives health care workers from other institutions access to a patient's medical records.

Recombinant factor
Clotting factor that scientists and engineers make artificially inside a laboratory; cells that produce factor are grown inside a controlled environment in the lab.

An acronym that stands for Rest, Ice and Immobilization, Compression, and Elevation. These are the steps you can follow in case you have an injury that causes a bleed.

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A monetary award typically given to individuals who present high academic or athletic achievements or who have made a contribution in the community.

A person living with hemophilia injects himself with clotting factor. This process is called self-infusion. This is done intravenously using a syringe and butterfly needle.

The acronym that helps us set productive goals: specific, measurable, achievable, realistic, and time-appropriate.

Standardized Test
A test administered by the government or school system that is used to evaluate students of the same grade level in a fair manner.

The physical and emotional response of your body to pressure.

Situations or demands that cause pressure.

Surgical synovectomy
An operation to remove the synovium in a joint. It is used when more extensive joint damage with cartilage erosion makes an arthroscopic synovectomy impractical. The surgeon makes an incision in the joint to remove the synovium and smooth any rough spots on the bones themselves. This operation is also called an open synovectomy.

Synovial membrane
Also called the synovium. It is a layer of special cells that line the capsule of the joint.

A type of joint disease caused by repeated bleeding into the joint cavity. The synovial membrane, in an attempt to remove old blood and debris from the joint, grows new blood vessels and becomes thicker and prone to repeated bleeding.

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Three-Sentence Health Summary
An easy way to discuss important health information with your health-care team.

The process of becoming self-sufficient and learning to manage your hemophilia on your own. Transition may involve moving from a children's hospital or treatment centre to adult care.

A fee charged by post-secondary schools that covers the cost of the courses a student enrolls in as well as maintenance of facilities and services.

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An imaging technique that uses sound waves to take pictures of the inside of your body. These pictures give your doctor information about the size, shape, and texture of the body part being scanned.

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Medicines that are injected, usually into the muscle, to help protect you from serious infections and diseases.

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A type of radiation that passes through the body. It's a quick way for your doctor to visualize the internal structures of your body.

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About the Program

Welcome to the Teens Taking Charge: Managing Your Hemophilia program! The aim of this program is to give you the tools you need to take more responsibility over your hemophilia. As you get older, you will eventually switch from a paediatric clinic to an adult clinic. This transition means learning to be more proactive about your care. During this program, you will develop the self-management tools to make this transition easier for you. The program will help you improve your understanding of hemophilia, through the use of videos and animations on the topic. 

What can you expect in each module?


Each module begins with a video. The video introduces you to the topics covered in that module. These videos contain members of the SickKids comprehensive care team (CCT) like doctors, nurses, physiotherapists, social workers, and psychologists, as well as teens with hemophilia.

The locations of the “play” and “stop” buttons are indicated on the image to the right; the “play” button also works as a pause button. We encourage you to pause the video at any time to read the subtitles or get a closer look at something being shown. You can also adjust the volume.



Throughout the modules, you will see animations. These look like still images, but are actually a series of moving images accompanied by captions. The animations will prompt you to “click” to advance to the next image. The image will not advance until you click on “next”, so you can work at your own pace. If you miss something or want to review there is also a “back” button. Only images that have the “Click to Start” button have this function.


Interactive Windows

At times, you must click on different parts of the animation to view the information.You are free to work your way through the material in any order you like. Just make sure you take a look at everything.



You will see images and diagrams on each page. The diagrams are designed to illustrate the content discussed in the modules. They can show you the location and appearance of structures that are described in the text.



You will find useful tips inside the bold, black boxes throughout the modules.

Summaries, Quizzes, and Glossary Widget

Each module contains a summary, and a drag and drop quiz. These features are available in the left-hand navigation menu. You will also find a 'Glossary Widget'. It provides definitions for some of the more complicated vocabulary you will encounter. If you are unsure of the meaning of a word, check the glossary for help. Learning these terms is an important part of understanding and managing your hemophilia care. As you gain more responsibility, you will talk to your health care team on a regular basis. This means you will need to be comfortable using medical words related to your treatment like 'prophylaxis', 'physiotherapist' and 'on-demand therapy'. These words may be tricky to pronounce at first! But as you learn about them in each module, they will eventually become a usual part of your  vocabulary.

navigation including summary quiz and glossary