Articles, Blog

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

March 4, 2020


– 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.

13 Comments

  • Reply Hailey Blackstock October 16, 2019 at 8:28 pm

    Ahhhhh stop cutting these out

  • Reply Linda Kennedy October 16, 2019 at 8:37 pm

    EB is very painful. During dressing changes, which are frequent, it's horrible.

  • Reply Maria Abrams October 16, 2019 at 9:37 pm

    This is crazy to see this, because my 17yr old daughter has EB. Love that this disease is being talked about.

  • Reply Nicolle Monoxelos October 17, 2019 at 12:27 am

    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.

  • Reply Syn Silver October 17, 2019 at 11:59 pm

    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 NAET.com 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

  • Reply Nate DrDieLess October 18, 2019 at 4:03 am

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

  • Reply Gary Levy October 18, 2019 at 3:24 pm

    My son lived 21 years full of pain and heartbreak with RDEB…RIP

  • Reply Fueled by cannabis and anxiety October 19, 2019 at 4:49 am

    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!!

  • Reply Jennifer Coleman October 28, 2019 at 5:13 am

    What an awesome kid.

  • Reply Mark Griffin October 28, 2019 at 9:20 pm

    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, Debra.org.

  • Reply poetry pebbles October 29, 2019 at 7:59 pm

    Love and prayers from Texas.

  • Reply Barefoot Scientist December 3, 2019 at 7:55 pm

    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.

  • Reply TinaKii LuEll December 23, 2019 at 9:22 am

    Brave boy

  • Leave a Reply