Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    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!

    Links 
    Changing Relationships, Changing Lives
    Defining a New Normalcy
    Complex Emotions
    Caregivers and Depression
    What Can I Do About Anger?
    What Can I Do About Anxiety?

    "Life After Loss"

    Relieved and Guilty
    Who Am I Now?
    Refueling Time
    Grieving for Years
    Moving On
    Caregiver Voices
    Blogs, Videos and Voices of
    Rare Disease Caregivers
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    © 2020 by Caregiver Action Network. Created with support from Genzyme.