Breaks my heart the pain people with EB have to endure and live through it. Everyone out there who struggles with this, know how strong and inspirational you are. Even with that, you all accomplish so much. ❤️
Hopefully the figure out a gene therapy in the meantime also. There are a couple people that have been grafted with new skin that mostly cures this disease.
There is a kinda weird channel here on yt where scientists/therapists claim that they are on their way to find a cure, based on cells therapy. But all of this looks strange and unprofessionnal. I really hope that serious scientists will find more ways to help people with EB and bring them as much as relief they can.
My friend just gave birth to an amazing little EB warrior. He's so precious but everyday is a struggle for him and new challenges develop everyday. He and his family are doing an amazing job tackling this challenging condition. The last case his team treated was over 5 years ago but they are doing the best they can. There's a lot to learn. I hope they find a cure one day soon.
You are a Warrior, a Super Hero, and one of the strongest people in the world. I deal with constant pain myself from a Neurological Disorder that is rare. You have given me hope to carry on & fight through the pain. You make me feel better about having to stay at home in my room most of the years since I've been sick, which is about 15 years. I have so much love & sympathy for you & wish I could make it all go away. Just know that you are my Hero & I am praying for you all the time. Blessed Be to you, my Warrior. Love, Emma
This must be so hard you couldn't even eat cookies or chocolate I don't have EB but the thought of not having food or play in a playground would be upsetting love the work this charity does for a disease not many people know at all
Anybody with this disease- I have to tell you- YOU ARE STRONGER than any of us common folks. You're unique and one of a kind. You're strong in ways I can never understand. Stay enlightened always.
I feel bad now cause people who don't have EB always when they get sick by any think like headaches and more. All they ever say is mom I am so sick of this why can't you give me this and this can't you see my head hurts mom and the mom have to handle this child but people with EB they get every day pain and say nothing cause no one can do any thing about it so if you don't have EB say thank god and even people with EB say thank god and hop god will take this out of you
A step towards the treatment of EB is a big work for those families having from this EB disease. My baby is also sick from this EB disease, if you find some treatment, then please let me know.
this disease I just learned of tonight, I have watched 4 videos of the kids that have it, its truely a dispicable nasty excrutiating disease, no child should have to suffer it. The looks on all these boys faces is that of sadness and pain. God I pray a cure is found for it, these poor children, its absolutley heartbreaking to know kids have to suffer like this. God help them.
Parents love is great. Having faith makes pain endurable as flesh is illusion and spirit is real. Bearing with love and faith makes miracles happen. Oh god increase our love and faith. 🙏
Never again tell another human being, especially a desperately ill and suffering child, that their pain is “endurable” and that “flesh is an illusion.” No one wants to hear generic empty religious nonsense on top of denials of the reality of this child’s horrific suffering.
God please by your will, bless this family and I pray they find a cure and this prayer opens the doors to lives bringing then closer to you,may this family see you out and trust you always Amen
Its caused mainly due to a genetic defect which leads to deficiency of synthesis of collegen type 7....... this collegen type 7 mainly functions in holding the dermis and epidermis of skin together..... Hence deficiency of collegen leads to easy bruising and blister formation.....
My girlfriend brother having EB and he is only 12 yr old boy.....plzz help me about the medications and precautions about EB .....And i am from INDIA Where wheather condition is mixup of all the wheather....
read Courage Under Wraps Photographic Documentary of Nicholas Zahorcak Living with Epidermolysis Bullosa and Butterfly Child a Mothers Journey by Silvia Corradin.
+rdgloveshouse when skin is gone or when it's vulnerable whether outer skin or inner tissues which means the vital organs are endangered by infections ,that's why they keep them in bandage ,they also take antibiotics on a regular basis . Also eating problem is another matter which brings malnutrition whatever supplements they are given still malnutrition is one of other factors . It's a very bad condition when it's severe . Life expectancy varies by how severe their conditions are . Some die before 10 ,some live up to 30s.
This kid needs a trip to Mexico for stem cells treatment. Stemcells grow back whatever is missing. Caused by a faulty gene, fact is Western medicine has no cure, but if you go to Mexico you can get stem cells treatment and the way that works is whatever is missing is replaced. There are treatments for as low as $1200
ATTENTION, ATTENTION, ATTENTION: Syrian scientists have managed to find a solution to this problem, they tested a German child suffering from this disease and the results are wonderful.
Everytime this kid TOUCHED. HIS. SKIN. **ITCHED IT WITH THE BANDAGE.** I CRINGED. DO NOT. FUCKING. SCRATCH YOUR SKIN. IF YOU HAVE THE “BUTTERFLY SKIN” ILLNESS.
This questions me what is God? Did god literally made him suffer he’s entire life? What did the kid even do to deserve all of that pain? There’s literally killers all over the world and god doesn’t do anything about them? What’s the point of god? This really answers that god doesn’t exist I once read that a baby have no sins but there’s literally hundreds of baby getting born and having a deadly disease because of genetic
Has any of these children ever tried Electromagnetic Pulse Therapy? Is have proven to be highly beneficial to people with severe skin conditions & and improves overall wellbeing. It would be really great to see new research on this with a post from DEBRA showing results.
Hello I can Shall I show a place to treat But one this place in Iraq called the blessing Hayousef It is a mage in which a mixture of natural substances that cures all ailments and tried and God and Arushdkm a sacred place and God that he heals quickly and I must have your faith Venhano Nltgy them at what unable medicine Malk
How about you leave your hatred out of this... my God is my hope, and the same goes for many others that lend their support in these comments you have no place here.
My cousin has this disease, he's only twelve and has the biggest negative outlook on life oh and he wants to commit suicide so if you ask me god needs to stop making plans
This is so heartbreaking. The kids and the parents dealing with this are so incredibly strong. I can’t even imagine or put into words.
This Boy was my best friend and honestly i have never met someone as strong as him he will be missed
He passed away??
@@Abikuttan People with eb unfortunately don't live past their 20s. May they all rest in piece, and have a better life in their afterlife.
@@closecall3411 this is mercy from God to take them
@@MrDentmedo what? Mercy to live 20 years in pain
Wow
OK. Lols. Whatever helps you sleep at night
That's crazy for you to say
@@davelloyd820 I mean their death is mercy not to suffer any more
Breaks my heart the pain people with EB have to endure and live through it.
Everyone out there who struggles with this, know how strong and inspirational you are.
Even with that, you all accomplish so much. ❤️
Wow. What a wonderful boy with grace and intelligence. One day you will have a glorified body, free from pain and suffering
Hopefully the figure out a gene therapy in the meantime also. There are a couple people that have been grafted with new skin that mostly cures this disease.
There is a kinda weird channel here on yt where scientists/therapists claim that they are on their way to find a cure, based on cells therapy. But all of this looks strange and unprofessionnal. I really hope that serious scientists will find more ways to help people with EB and bring them as much as relief they can.
I miss you EJ. I know you are at peace, dancing, running free with no more pain. You are Forever missed.
My friend just gave birth to an amazing little EB warrior. He's so precious but everyday is a struggle for him and new challenges develop everyday. He and his family are doing an amazing job tackling this challenging condition. The last case his team treated was over 5 years ago but they are doing the best they can. There's a lot to learn. I hope they find a cure one day soon.
You are a Warrior, a Super Hero, and one of the strongest people in the world. I deal with constant pain myself from a Neurological Disorder that is rare. You have given me hope to carry on & fight through the pain. You make me feel better about having to stay at home in my room most of the years since I've been sick, which is about 15 years. I have so much love & sympathy for you & wish I could make it all go away. Just know that you are my Hero & I am praying for you all the time. Blessed Be to you, my Warrior. Love, Emma
Poor baby, I hope he's doing much better now. God bless you sweetie pie.
This must be so hard you couldn't even eat cookies or chocolate
I don't have EB but the thought of not having food or play in a playground would be upsetting love the work this charity does for a disease not many people know at all
He's lucky to have such an amazing stepdad. Most guys absolutely do not care about their partner's children.
Don't worry EJ, I have it too... I feel for you. And we can fight this.
Etoile Shizuyo I have it too. Let's all fight together.
Omg you poor souls I’m so sorry you guys have to go through such horrid things!
Look up @melissa_2010 on instagram she shows how muchh dogs can help with the burden of your disease!
Anybody with this disease- I have to tell you- YOU ARE STRONGER than any of us common folks. You're unique and one of a kind.
You're strong in ways I can never understand. Stay enlightened always.
There is an unlimited number of equally bad issues one can have in their life, but okay...
I have EB,not one of the worst verision of the diagnos,but I Still get hurt very easy
Damn, sorry for you man.
Damn bro I feel bad for people like this 😢😢😥😥😥
Isac Gustavsson So do I, I have a very mild case, but I blister up easily and I get a lot of bruises. Nice to meet a fellow EB patient
ya nice to meet people with the same thing
I have the move mild version of it. I am able to work hard labor jobs but I get hurt a lot by nothing. haha. I inherited it from my father
Love, love, love you, EJ! ❤💚💛
Hola soy madre de una niña cubana con Epidermolisis Bullosa Distrofica Reseciba veo todos estos videos y mi corazón se rompe
Wow thats awesome you adopted him love it
I feel bad now cause people who don't have EB always when they get sick by any think like headaches and more. All they ever say is mom I am so sick of this why can't you give me this and this can't you see my head hurts mom and the mom have to handle this child but people with EB they get every day pain and say nothing cause no one can do any thing about it so if you don't have EB say thank god and even people with EB say thank god and hop god will take this out of you
A step towards the treatment of EB is a big work for those families having from this EB disease. My baby is also sick from this EB disease, if you find some treatment, then please let me know.
+Ghulam Mustafa God bless you and your child :'(
this disease I just learned of tonight, I have watched 4 videos of the kids that have it, its truely a dispicable nasty excrutiating disease, no child should have to suffer it. The looks on all these boys faces is that of sadness and pain. God I pray a cure is found for it, these poor children, its absolutley heartbreaking to know kids have to suffer like this. God help them.
Jitne logo ne dislike unko dard nhi dikhta agar aap shi mnte hai to like kre
THIS ILLNESS IS SO UNFAIR NOBODY SHOULD HAVE TO SUFFER LIKE THIS IT BREAKS MY HEART TO SEE IT
I have this but luckly mine is not so bad, i hope someday scientist can solve this
I have this condition also and sometimes I think "God this sucks" but then I realize there is types worse than mine
It sounds and looks rough hopefully they liberate more of the treatments for this and you can get some relief.
What a Champion! ♥️💪
Ej you are my hero♥♥♥and you have captured my heart:):):):):):)
I really feel for you guys !
Parents love is great. Having faith makes pain endurable as flesh is illusion and spirit is real. Bearing with love and faith makes miracles happen. Oh god increase our love and faith. 🙏
Never again tell another human being, especially a desperately ill and suffering child, that their pain is “endurable” and that “flesh is an illusion.” No one wants to hear generic empty religious nonsense on top of denials of the reality of this child’s horrific suffering.
My nephew was born 2 days ago and has this diagnosis...it can't be real.
A must watch
No, it gives them a reality check that their life isn't that bad compared to others.
God please by your will, bless this family and I pray they find a cure and this prayer opens the doors to lives bringing then closer to you,may this family see you out and trust you always Amen
BRETT WINCHELL
If God gave a shit, he wouldn't have let the boy be born with EB. What, God needs you to tell him to do the right thing??? BS!
@@lovingmayberry307 Well aren't you an angry person. Its sad that you have to live in your condition.
@@Wingnut353 Yeah I know he's rational, what a shame, huh?
Amen
Its caused mainly due to a genetic defect which leads to deficiency of synthesis of collegen type 7....... this collegen type 7 mainly functions in holding the dermis and epidermis of skin together.....
Hence deficiency of collegen leads to easy bruising and blister formation.....
My girlfriend brother having EB and he is only 12 yr old boy.....plzz help me about the medications and precautions about EB .....And i am from INDIA Where wheather condition is mixup of all the wheather....
Our family helps one child with this disease
stay strong EJ
"The Worst Disease You've Never Heard Of"... Unless you watch back to back videos about it!
This is so sad :(
im a pediatric it can be life long
MY FRIEND HAS THIS
Sad I'm very very very sorry
what that oooooh iam sad from that
I have eb but not as bad and when I saw this I felt bad
My sister has this
read Courage Under Wraps
Photographic Documentary of Nicholas Zahorcak Living with Epidermolysis Bullosa and Butterfly Child a Mothers Journey by Silvia Corradin.
İ watched simular things in tlc 5 years ego.this incorriegible ilness why you dont help these people
what is the average lifespan of these children?
mid 20s
Madyson O do they pass from infection ?
theyre just born with i think its genetic
no i know its genetic but I'm wondering what causes the death
+rdgloveshouse when skin is gone or when it's vulnerable whether outer skin or inner tissues which means the vital organs are endangered by infections ,that's why they keep them in bandage ,they also take antibiotics on a regular basis . Also eating problem is another matter which brings malnutrition whatever supplements they are given still malnutrition is one of other factors . It's a very bad condition when it's severe . Life expectancy varies by how severe their conditions are . Some die before 10 ,some live up to 30s.
This kid needs a trip to Mexico for stem cells treatment. Stemcells grow back whatever is missing. Caused by a faulty gene, fact is Western medicine has no cure, but if you go to Mexico you can get stem cells treatment and the way that works is whatever is missing is replaced. There are treatments for as low as $1200
what the fuck kind of music choice is this?
Domo is back vm
gsqkbxjigsvb
ATTENTION, ATTENTION, ATTENTION: Syrian scientists have managed to find a solution to this problem, they tested a German child suffering from this disease and the results are wonderful.
this is sad :( Omg your kid is really sad I feel bad I submitted
Everytime this kid TOUCHED. HIS. SKIN. **ITCHED IT WITH THE BANDAGE.** I CRINGED. DO NOT. FUCKING. SCRATCH YOUR SKIN. IF YOU HAVE THE “BUTTERFLY SKIN” ILLNESS.
Time to pop a percocet and a Molly watch that shit take away the pain
Thanks god i have not that disease on my skin
that poor kid
This questions me what is God?
Did god literally made him suffer he’s entire life? What did the kid even do to deserve all of that pain? There’s literally killers all over the world and god doesn’t do anything about them? What’s the point of god? This really answers that god doesn’t exist
I once read that a baby have no sins but there’s literally hundreds of baby getting born and having a deadly disease because of genetic
Old comments :)
So sad :(
I know
poor kid i cant belivie
this
Has any of these children ever tried Electromagnetic Pulse Therapy? Is have proven to be highly beneficial to people with severe skin conditions & and improves overall wellbeing. It would be really great to see new research on this with a post from DEBRA showing results.
Don’t act like you know better than the doctors working to cure EB
So sad
Thats not really funny though.... Thats just sick
Hello I can Shall I show a place to treat But one this place in Iraq called the blessing Hayousef It is a mage in which a mixture of natural substances that cures all ailments and tried and God and Arushdkm a sacred place and God that he heals quickly and I must have your faith Venhano Nltgy them at what unable medicine Malk
shut the fuck up! That's Bullshit. Never worked for me never gonna work.
I'm not Iraqi just in case.
god is great
Oh I musta missed that part. You religitards find a way to rationalize everything.
:(
God has nothing to do with this, so please don't bring religion into this. :/
Crystal Dice cuz there is not one.
what makes you say that??
How about you leave your hatred out of this... my God is my hope, and the same goes for many others that lend their support in these comments you have no place here.
Well....God has plans for all of us
My cousin has this disease, he's only twelve and has the biggest negative outlook on life oh and he wants to commit suicide so if you ask me god needs to stop making plans
aaron cabral Strangely enough, I have EB and I'm the biggest optimist I know...
God's plans suck hard!
Shut the fuck up ! You are horrible !
fuck this "God" then.
There’s no god
This is awful :(
I recomended to see Propheta tb Joshua healing skin, he is a prophet that heal of Christ' Power, you should believe, please watch the videos, SCOAN
he was adopted
Jahmari Biggs
Not totally correct. That's his biological mother, she married this guy who adopted EJ.