This Rare Illness Hits Close To Home For Kaley Cuoco: Epidermolysis Bullosa

This Rare Illness Hits Close To Home For Kaley Cuoco: Epidermolysis Bullosa

– I am very excited that
you use your platform to shine a light on things that maybe not everybody knows about. This is really cool. – Well, that’s how I
feel about you, as well. Yes, my manager, who I’ve been with since I was literally 14 years old, been with my entire team since I was basically 14, 15 years old– – [Kelly] Wow!
– So we’ve become very close. Her son has a very rare disorder,
disease, called EB, EBMRF, and it’s very rare, and
nobody really knows about it. And we’re trying to get the
word out about it, spread some– – I had never heard about it! – Most people haven’t, and then you see it and you hear about it, and it’s really tough, and he lives with this every single day. And this family is amazing, and we just wanna find a
cure for this effing thing, sooner than later.
– [Kelly] Yes, yes! (claps) – See, the f-word again! (laughs) (crowd cheers) – My next guess is a family that’s close personal friends with Kaley and is coping with a rare illness that is as tragic as it is mysterious. Take a look. – Ooh, hi, kitty! – I’m Brandon. I am 15 years old, and I live
in Los Angeles, California. I have epidermolysis bullosa, which is a skin condition
that you’re born with, which means I have very fragile skin. – Basically, you’re missing the
gene that produces collagen, which binds the layers
of the skin together. – Brandon wants to participate
as fully as he can, and when he has bad days
and can’t get out of bed, it’s just, it’s really,
it’s heartbreaking. – And he deals with an enormous challenge quite gracefully, I think. – I want people to know that, yeah, it doesn’t define me, and there’s gonna be
good days and bad days, And I try to just get over the bad days and just keep hoping for the good days. – [Andrea] We are amazed everyday at his ability to just wake
up and deal as best he can, and life is tough, but so is he. (claps) – Y’all, please welcome
(crowd cheers) Andrea Pett-Joseph, her
husband Paul Joseph, and their son Brandon.

16 thoughts on “This Rare Illness Hits Close To Home For Kaley Cuoco: Epidermolysis Bullosa

  1. So awesome what a strong sweet boy.what an amazing family! thanks so much for covering this story.i can't wait to watch the full story later.🙂

  2. I love that she’s showing awareness! I have EB and have my whole life!! This actually made me cry! THANK U SO MUCH KELLY😭✊🏼🙏🏼💖

  3. Awesome people are bring awareness to rare conditions. Mine is extremely rare and I’m the only person in New Zealand with Long-Chain 3-hydroxyacyl Co enzyme A Dehydrogenase Deficiency (LCHAD) I am the only one in. We zealand with it with a population of just under 5mill. There are only around 600 in the world

  4. I have a cousin with this illnesses it was worse when he was a child he suffered so much both his parents passed away now he a man 👨 by himself

  5. My almost 2yr old nephew has EB and it rips my heart out seeing him with blisters and scabs and his skin literally falling off but he is such a happy little squish he just lights up rooms.

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