Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
ONCE UPON A GENE - EPISODE 132
Rare Disease Caregiving Post Childhood with Rare Mom and Advocate Karen McEwen
Karen McEwen has an 18 year old daughter with laryngeal cleft primary ciliary dyskinesia (PCD). Her and her daughter have been active advocates through speaking, writing and support groups. They're also fundraising for the PCD Foundation and working to get a PCD clinic at major hospitals in every state.
EPISODE HIGHLIGHTS
Tell us about your family and your daughter Elana.
My daughter Elana is 18 years old and a freshman in college. She has a rare disease called primary ciliary…
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