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A Matter of Time: Shining Light on EB

A Matter of Time: Shining Light on EB

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 What if your touch caused someone pain? What if a simple hug could tear skin? In this deeply personal and emotional episode, Kelly Renee shares the raw truth about Epidermolysis Bullosa (EB). A rare, devastating skin disorder known as “Butterfly Skin.” After witnessing her own nephew battle this cruel disease, Kelly takes us through her journey from helplessness to activism and sheds light on a fight too few know about, but none should ignore. Along the way, she brought in longtime friend Jill Vedder, wife of Pearl Jam frontman Eddie Vedder, whose involvement helped amplify the cause and bring greater visibility to the EB community. This episode isn’t just about raising awareness; it’s about hope, legacy, and the fierce determination to never give up, even when the timeline stretches longer than you hoped. Key Takeaways What EB is and why it's so urgent that more people know How a personal plea turned into a $70M+ movement The heartbreaking daily reality for children living with EB Why visibility, funding, and research still matter now more than ever A behind-the-scenes look at A Matter of Time, the new EB documentary Why some patients are sacrificing their own comfort to give younger generations hope In This Episode (00:01) Introduction to Fiercely Unfiltered (00:40) Introducing Epidermolysis Bullosa (EB) (01:16) Personal family story: discovering EB (02:25) Seeking help and starting a foundation (03:27) The reality of living with EB (04:27) Daily care and parental challenges (05:41) Progress and hope for a cure (06:56) Eddie and Jill Vedder’s involvement (08:06) Symbolism and personal motivation (09:11) Documentary impact and ongoing struggles (10:25) Financial and medical burdens of EB (11:32) Gratitude and closing thanks Notable Quotes [02:25] "I need you to make a difference. I need you to bring attention to this. I can't do anything, and I need your help." — Kelly Renee [04:45] "To be a parent and have to give your kid a bath and bathe them in bleach for their blisters and wrap them while they're crying in pain is something that was hard for me to even be in the same house and listen to." — Kelly Renee [06:56] "They call it the Butterfly children because their skin is as fragile as a butterfly wings." — Kelly Renee Resources and Links Fiercely Unfiltered Fiercely Unfiltered with Kelly Renee Kelly Renee Instagram Facebook Website

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