Hemophilia and talking to health-care professionals

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Teens living with hemophilia can learn how to talk about their condition when meeting new doctors and health-care workers.

Learning to talk about your hemophilia to health-care professionals is one of the most important parts of transition. This is especially true when visiting the emergency room or other hospitals where the staff may not be as familiar with your condition and treatment plan.

Three-sentence health summary

A helpful way to communicate to health-care professionals is to use three short sentences that describe the most important aspects of your hemophilia.

Here is an example of a three-sentence health summary:

  1. "I was diagnosed with severe hemophilia A (factor VIII deficiency) when I was 2 months old."
  2. "I am on prophylaxis treatment and I infuse X IU of recombinant factor 8 (VIII) three times weekly."
  3. "My right ankle is a target-joint and I have some arthritis and chronic pain in this area."

Keeping it concise will help you to:

  • remember which details about your hemophilia you want to discuss
  • show the health-care team that you are knowledgeable about your condition
  • receive the care you need more efficiently.

When summarizing your health condition, remember to include the following:

  • type of hemophilia: A or B
  • severity of condition: mild, moderate, or severe
  • age you were diagnosed
  • your treatment routine: prophylaxis, tailored prophylaxis, or on-demand
  • frequency of infusions
  • type, brand and dosage of the factor you use
  • other medicines you are on and the reason (i.e.: DDAVP)
  • complications you have (inhibitors, target-joints, arthritis, chronic pain)
  • major bleeds that have impacted your health
  • other medical conditions.

Now, take a few minutes to create your own Three-Sentence Summary. If you aren’t sure what to include, ask a family member. Take your summary to your next clinic visit and show it to your clinic nurse or doctor to make sure you included all the important information.

FactorFirst card

The Canadian Hemophilia Society (CHS) provides a wallet-sized card that you can carry with you to help you tell health-care providers in the Emergency Room about your hemophilia. A copy of this card can be obtained from your CCT or you can download and print a copy from the CHS website.

MyHealth Passport

This is a wallet-sized card you can fill out and print online that has all of your relevant health information. Your health passport is particularly helpful when seeing health-care providers who do not know about your hemophilia. If you do not have all the information you need to fill out the passport, ask your parents or a member of your CCT to help.

You can create your own here: My Health Passport. Remember to select hemophilia from the drop-down menu before you begin.

Last updated: March 13th 2019