"I think it makes me feel better because I'm letting it all out to my friends.  And I know they'll try to understand."
- Destiny

Friends & Coworkers

How can you help?

When you learn that a friend has a serious rare medical condition, you may feel overwhelmed and unsure how to help. What can you do? How will the strains of dealing with Fabry disease affect your friendship?

You may be surprised to know that one of the more helpful things you can do is to educate yourself about Fabry disease. Even when your friend does not wish to talk about Fabry disease, having friends who have taken the time to educate themselves can make a difference.

FabryCommunity.com is part of Genzyme's ongoing commitment to providing education, support, and disease management for people with rare genetic diseases. Here you'll find comprehensive information about the disease, as well as resources and links to the wider Fabry community.

  • Supporting a friend with Fabry disease

    Do you have a friend or coworker with Fabry disease? Here's some suggestions on how to prepare to help if asked:

    Don't be afraid to ask questions. The disease progresses differently for every individual, so listening to their experience can help you better support their situation.

    Be conscious that your friend may not always want to discuss the disease.

    Educate yourself on the disease, so you can better understand the symptoms and underlying medical conditions that your friend may encounter.

    Understand how your friend likes to cope and manage their condition over time. The symptoms can vary widely and may require different help at different times. For example, episodes of pain may lead them to stay in bed periodically.

  • The facts about Fabry disease

    • Fabry disease is an inherited disorder that can only be passed down from a parent. It is not contagious. 
    • A major symptom of Fabry disease is fatigue. It may be difficult to participate in physical activities such as sports.
    • Fabry disease is largely under-diagnosed. People often experience symptoms for several years before diagnosis.
    • Those with Fabry disease often experience heart, kidney, cerebrovascular, gastrointestinal problems, and pain.

  • Learn more about Fabry disease

    Fabry Disease Overview

    Learn the basics about symptoms, causes, and diagnosis.

    Signs and Symptoms

    Fabry disease is progressive, and tends to get worse with time. Your friend's symptoms may be affected by age and gender.

    Genetics and Fabry Disease

    Fabry disease is an inherited disorder that is not contagious. It can only be passed from parent to child.