Torofy Blog

Depression and Heart Disease

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.

24 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.

  6. Kelly & Kaley, I'm big fan of you both. My advice is to have this family consult with Dr. Devi Nambudripad who performs absolute heart rendering results via her NAET Practitioners around the world. She is semi-retired, but lives near Buena Park, CA. Her entire family of Doctors/Practitioners are dedicated to such treatments that otherwise go untreated. I've known them personally for 20+ years, and have been treated by Dr. Devi Nambudripad & Dr. Mala Moosad ( her sister ) with amazing results. Reference their website for further information.
    Best wishes, tell them Terry from Seattle referred you !!!

    Dr. Mala Moosad
    900 E. Lincoln Ave
    Orange, CA 92865
    (714) 637-6370

  7. My 7 yo son has it. Called the worse condition you've never heard of. People who have are called Butterfly Children.

  8. I am a rare disease mom myself. My girly has PKU, so she is very intolerant to protein and she is on a strict medical diet. I've seen this boys story a few times now and it is just amazing how well his mama handles herself. I would be a walking disaster in her shoes. What a warrior mama she is!!

  9. My 6 month old granddaughter just died a month ago. She had the most severe form, called Junctional EB. Our family has been raising money to give to the main foundation that is supporting EB research,

  10. Thank you for shining a light on EB. If helpful to anyone, some parents have found our blister prevention spray (PreHeels) to help their kids to be a little more active. Feel free to reach out to our team, if you have any Qs.

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