Doctor Discussion Guide
With a rare disease like Fabry, people won’t necessarily understand what you’re going through until you tell them. You may need to personalize how you communicate your needs based on who you’re talking with (healthcare providers, coworkers, friends, etc).
No two people experience Fabry disease the same way. That’s why it is up to you to make note of the Fabry effects you feel and keep your care team in the loop about what’s going on. The only person who can explain what you’re going through is you.
Scroll through specialized resources on some of the different effects of Fabry disease:
While you may experience pain (burning, stabbing, tingling), the pain you’re in isn’t always outwardly obvious to others. And trying to explain your pain to the people in your life can be difficult. Below are some statistics on pain in Fabry. Each is paired with an explanation to help you better describe what you may be experiencing the next time it occurs.
Sudden, intense pain that does not last very long.
Pain that is triggered by something that wouldn’t usually cause pain, such as hot water or even a light touch.
Intense pain that lasts hours or even days.
Pain that is always present.
Some things can make your Fabry pain worse. Everyone is different, so take note if one of these triggers you more than others. Be sure to tell your healthcare provider if any of the following seem to affect you.
Being sick with the flu, or with other acute or viral illnesses
Rapidly changing or extreme temperatures
Knowing more about Fabry can help you explain your unique experience with it. You can do a few things to be more prepared for your next appointment with a healthcare provider:
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