Fabry Discussion Driver

Take the wheel during your next appointment.

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This guide was created to help you have a productive discussion with your healthcare provider by allowing you to organize your thoughts ahead of time. As this is only a guide, please be sure to talk to your healthcare provider about any additional information you would like to discuss or questions you may have.

This information is for your eyes only. No information entered will be saved or stored.

If a section isn't relevant to you or your upcoming appointment, you can click skip and move on to the next section.

This guide was prepared on for an upcoming appointment with on at .

  • Symptoms
  • Disease Management
  • Tests & Appointments
  • Family
  • Goals

Let’s start by going over the symptoms you would like to discuss.

Choose a category to reveal more specific symptoms. Once you select a specific symptom, you can indicate how severe it is.

Digestive Issues

  • Nausea/vomiting

    Nausea/vomiting
  • Cramping

    Cramping
  • Diarrhea

    Diarrhea
  • Constipation

    Constipation
  • Bloating/pain

    Bloating/pain

Pain

  • General nerve pain

    General nerve pain
  • Burning in the hands and feet

    Burning in the hands and feet
  • Swelling in the arms and legs

    Swelling in the arms and legs

Mental Health

  • Depression

    Depression
  • Anxiety

    Anxiety
  • Brain fog

    Brain fog

Heart Issues

  • Irregular heartbeat

    Irregular heartbeat

Breathing Issues

  • Wheezing

    Wheezing
  • Difficulty breathing

    Difficulty breathing

Tiredness

  • Fatigue

    Fatigue

Balance Issues

  • Vertigo

    Vertigo
  • Dizziness

    Dizziness

Intolerance to Temperature/Activity

  • Intolerance to heat

    Intolerance to heat
  • Intolerance to cold

    Intolerance to cold
  • Intolerance to exercise

    Intolerance to exercise

Something Else

  • Add additional symptom

    Add additional symptom

  • Symptoms
  • Disease Management
  • Tests & Appointments
  • Family
  • Goals

Now, let’s get into how you may be managing your Fabry.

Though there are different treatment options for Fabry disease, let's focus on how you and your healthcare provider may currently be treating yours.

Are there reasons why you aren’t treating your Fabry?

  • Symptoms
  • Disease Management
  • Tests & Appointments
  • Family
  • Goals

Let's review your tests and appointments.

Because Fabry is a progressive disease, guidelines recommend regular monitoring of different organ systems and your mental health by your care team.

Select the categories below to discuss specific test results or appointments with other healthcare providers

Kidneys

Tests/results to discuss:

Heart

Tests/results to discuss:

Brain/Nervous System

Tests/results to discuss:

Lungs

Tests/results to discuss:

Digestive System

Tests/results to discuss:

Mental Health

Tests/results to discuss:

Genetics

Tests/results to discuss:

Ears

Tests/results to discuss:

Eyes

Tests/results to discuss:

Skin

Tests/results to discuss:

Hormones

Tests/results to discuss:

Other

Tests/results to discuss:

  • Symptoms
  • Disease Management
  • Tests & Appointments
  • Family
  • Goals

Because Fabry is a genetic disease, your family may be involved.

  • Symptoms
  • Disease Management
  • Tests & Appointments
  • Family
  • Goals

Let’s wrap this up by setting some appointment goals.

Remember that your appointment is your time to provide and receive crucial information about your health. Setting goals beforehand can help you take full advantage of the time you have with your healthcare provider.

What do you want to accomplish at your next appointment? (Check all that apply)

Add additional goal

How would you like to bring your Discussion Driver to your appointment?


Prepared on:

For my appointment on:

With:

Appointment time:

Goals

What I would like to accomplish at our appointment:

I have a question:


Symptoms

My symptoms include:

I wanted to be sure to mention:


Disease Management

I currently treating my Fabry. I am on .

I am with my treatment.

I am not treating Fabry because:

I am also taking/using

I’d like to discuss:


Tests and Appointments

Can we talk about the following tests and/or members of my care team?

I specifically want to bring up:

Regarding my care team:


Family

I am concerned a family member may have Fabry. They are my .

Please know: