The Emotional Effects of Living with a Chronic Rare Disease

Adrianna Tuomi, a licensed clinical social worker and Soft Bones Community Member and Region Lead will be presenting a webinar on the psychological effects of living with hypophosphatasia. She will walk attendees through different secondary diagnoses that can come with a chronic illness, which include anxiety, depression and medical trauma.

We will also be discussing coping strategies for living with a diagnosis and additional topics including:

-the role of caregivers

-the importance of self-care

-how to minimize burn-out and exhaustion from caring for a loved one

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When I found out I was pregnant, the thought of my innocent little baby having an ultra-rare disease never crossed my mind. I was asking myself questions like “Is it going to be a boy or a girl?”, “Am I going to be a good mother?”, “What am I going to name him/her?”. Then during …