Feelings You May Have

As a caregiver for someone living with a rare disease, you are not alone. An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.

Maybe your own personal caregiving situation started slowly – when your wife was diagnosed with adult Pompe’s disease, for example. Or maybe it happened all of a sudden – when your child was born with Tay-Sachs or another rare disease. But however it began for you personally, there are millions of other rare disease caregivers just like you facing the same challenges you are!

Being a rare disease caregiver is not something you wanted. And nothing can really prepare you for the emotional rollercoaster that comes with being a caregiver. On many days, you will probably feel overwhelmed. Many family caregivers in your situation also experience feelings of anger, depression, and guilt.

Just know that all these feelings are normal. And know, too, that for many people caregiving can ultimately be one of the most rewarding experiences of their lives!