Talking with Family

How do you discuss a life-changing illness with your family, especially an illness that may place other family members themselves at risk?

Adjusting to change

As Fabry disease progresses, family members will need to consider that you may need more rest, more often. They should expect that you may no longer be able to do all the things they’re accustomed to, or that you may need more help with certain tasks. They may need to consider taking on new responsibilities, such as caregiver, cook, or driver.

These kinds of changes can be unsettling, and are usually best dealt with in an atmosphere of mutual trust and support.

Fears are natural

A diagnosis of Fabry disease is almost certain to bring out fears in your family. Fears about you. Fears about how their lives will change. Fears about their own chances of having the disease.

Then there’s the uncertainty of not knowing what lies ahead. How will your lifestyle change? What happens to long-term plans and dreams? How will the bills (especially medical bills) be dealt with? These fears are to be expected.