Talking with Friends and CoWorkers


Being open with your friends about Fabry disease may help them to better understand what you’re going through. For example, explaining how fatigue is a part of Fabry disease may help them to understand why you periodically decline to participate in certain activities.  Whether to discuss your disease with friends is a very personal decision.  You may want to first discuss this with your doctor or other healthcare provider.


Deciding whom to tell about your illness can be especially difficult when it comes to your job. Do you tell your employer? Do you tell your coworkers?

There is no easy way to answer these and similar questions, except to say that the more the disease affects your work, the more it may require informing your employer and colleagues. You may, at some point, need to inform your employers so that they may accommodate your illness in some way.  Again, we encourage you to discuss any questions you may have with your physician.

It should be noted that there are a number of laws in many countries, including the United States, that address the privacy of medical information and medical leave policies for employers. There are laws that protect the rights of people with disabilities and make it illegal for employers to discriminate against qualified workers who have a disability. These laws may also provide guidance on accommodations that an employer might make in order to allow you to perform your job.