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).

Growing up is hard enough. It can be even harder when you have a rare disease. So, to help kids and young people manage it all, talk to the key people in their support circles. Having an involved support system can make a big difference.

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.

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.

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.