Family Matters

How Fabry disease can affect your family

Knowing that a relative has a serious chronic disease can change the dynamic of any family, bringing a wide range of emotional reactions into play.

Difficult questions

Changes can be especially stressful with a genetic disorder like Fabry disease, which carries across generations. If you carry the altered gene, whether or not you personally experience symptoms, you face difficult choices:

  • How will the diagnosis affect your decisions about having children?
  • Do you tell members of your extended family that they may be at risk, and if so, how do you do so in a way that will help?
  • How does the diagnosis affect your understanding of your family’s past? If, for example, your grandfather died at a young age of kidney disease, could it have been Fabry disease?

There is no one way to answer to these questions. Each family, and each person within the family, must address them for themselves.

How a genetic counselor can help »

Supporting a husband or wife with Fabry disease

Whether the diagnosis of Fabry disease was known before or after the relationship began, spouses can make a tremendous difference in the lives of people with Fabry disease. Finding the right balance between giving support and carrying on a normal life, between taking care of responsibilities and having fun: these things take commitment and practice.

If your spouse has Fabry disease, Fabry support groups provide opportunities to meet, talk, or correspond with other Fabry caregivers.

Find a Fabry support group »

Getting support from a genetic counselor

A genetic counselor can help both individuals and families deal with these issues. If someone in your family tests positive for Fabry disease, a genetic counselor will take you through a family screening process that can:

  • Identify affected family members
  • Determine the probability of each member having the disease
  • Identify carriers within the family
  • Address the psychological issues along with the physical