I have EB simplex. When I was expecting our first child, my mother in law prayed that the condition would not pass down, and it hasn’t. I am so grateful, I would gladly bear this condition for the rest of my life in gratitude for this reprieve. God is good to me, he gives me the strength to endure the pain and he gives my husband patience to care for me when I am disabled by it.
Thank you for this video. I have EB and im 19 in Oklahoma and doctors didnt help me when I was born. They actually wanted to put me in a "study/lab experiment" and I wont ever forget reading the papers it called me a subject and a thing. Its been a struggle but its inspiring to see this so thank you very much.
Im 16, recently moved to Colorado - Before living in New Mexico and no doctor or dermatologist has helped me. I went through a period of extreme breakout that lasted for what felt like forever and suffered through it because they looked at me like I was nothing and nothing could be done. I tried my best to take care of it all myself - as my dad couldn't do anything and my mom wasn't in my life at the time. Very hard. Especially when doctors don't look at you as anything more than a subject and I was heartbroken.
Wish For Death They want to take a piece of my skin and photo graph me, and then I just said fuck it I'm out and I don't even know what kind of EB I have!
I have EB simplex and this touched my heart because I remember the pain. Had as a kid :( not being able to wear cute shoes, not being able to attend PE because it physically hurt me. The stares. Nobody understood it. promise it gets better when you get older, calluses seem gross but they actually help act as a barrier and you find methods that work. It’s painful but God doesn’t give us anything that we cant handle! God bless you! It already breaks my heart knowing my children will have it but I’m praying for healing! ❤️❤️
thanks for reaching out. It is challenging, i remember the same things as a kid happening to me. How are you now? as you have got older? do you have kids yet?
I'm literally in tears with watching this ! Thank you for this video ! My God son has been diagnosed with EB after watching this I have so much more hope for him to be able to do what he desires to do , we are from New Jersey , USA before him I have never heard of this condition! I would love for my bestfriend to be able to speak with other families that are dealing with this condition ! Thank you so much .
Hi Briana, thanks for reaching out... its a painful condition to have and also to watch someone have it... bravery is what you will see emerge.... I'm happy to speak with the family... my email is brenden.brown@hillsong.com ... they can reach out and we can talk from there.... i would encourage you to check out our church in Jersey hillsong.com/nyc/new-jersey/ , my good friends Matt & Lindsey Bartgis are campus pastors there. Blessings Brenden
Thank you sooo much for making this video and putting it out there for others to see. Have recently welcomed a beautiful son into the world who has EB Simplex and it's so reassuring that there's support for families like ours. Wishing your wonderful family all the best ☺️ thank you x
+Angela Bradley Hey Angela, thank for your encouragement.. where are you guys living? feel free to share this and help spread the word...together believing we can find a cure
I also have EBS and up until this video have only ever really seen videos on the more severe forms of EB. I relate to so much of this video and would never wish the pain upon anyone. Along with me, my dad and uncle have EBS as well. You’re family seems amazing and I hope nothing but the best for you all!
Hey Cara, Thanks for the message. Its a challenging condition and i think its very hard for anyone to understand the pain.. hope they find a cure soon... stay strong. God bless
I’m originally from Gran Canaria (Spain) and I suffer from epidermolysis bullosa simplex as my sister and my dad . My childhood was very painful but as I born with the illness I never knew any different. In 2003 I moved to UK to improve my English speaking levels and I was surprised to notice that I barely suffer from my condition. Now I work running restaurants and I’m on my feet’s 12-13 hours a day. I have come to the conclusion that ( at least for me ) living in a cold weather country is the best option to live pain free and almost illness free . I hope that this comment helps a lot of people with the same illness. Best of luck to you all .
Thank you so much for making this video, I'm a 13 year old in Maine and all my family members have EB simplex including me, ranging from my great grandmother to everyone until me. I can relate to much of this video and it has helped me realize that it's not just my family going through this and that I shouldn't be ashamed of it.
Hi Margaret... I understand the pain that comes with this condition... you are very brave.... we to have it stem from our grandmother... with my aunties, uncles, cousins also having it... praying for strength for you. God bless
I have EB too but I dont know which kind because I dont want to give a piece of my skin to doctor, but yeah I'm all right and I also want to be a soldier. Anyway I'm gonna be 18 soon.
Your not alone i have ebs skin condition i have 2 big 2nd degree burns on my feet and 5 each on both hands i subcribe to you. If you ever want to relate find me on Facebook same pic as youtube ashley combs your children are strong and the fact that they still do what others do this made me cry cause i was put in foster care because people told dhhr that we was being abused and burned with cigarettes they seperated my family intirely at the age of 13 i was completely alone in the eb journey im now 24 i work everyday ive been forced to leave work because someone called health department and said i had a contiguous disease. Ive been through this for a reason our eb is to teach others it okay to look a little different and it inly makes you care so much more for others
@@brendenbrownofficial thank you so much honestly I love who I am skin disorder and all I do not wanr to change it about myself. I'm proud of it because it's made me more open minded and I couldn't imagine the person I'd be but I'm sure she wouldn't be as beautiful soul wise as I am.
YESTERDAY, I ATTENDED A FAMILY FRIEND’S BABY GIRL’S FUNERAL. SO SAD 😞 SHE JUST CELEBRATED HER 1ST BIRTHDAY LAST MONTH & SHE SPENT 8 MONTHS IN THE HOSPITAL. SHE HAD EPIDERMOLYSIS BULLOSA. TURNS OUT THAT BOTH PARENTS HAVE THE DEFECTIVE GENE. THEY NEVER KNEW. S.I.P. BABY ANAYA 🌹
Please try Avmacol. There is a mouse study 2007 that shows sulforaphane ameliorates EBS by upregulating Keratin17. It may substitute the functional loss of Keratin genes lost.
I can relate so much omg. I’m 14 from California and my most of my family has ended simplex version, and it’s been tough. I’m so glad that it’s going away as I get older but this really touched me
This video has made our family feel 10x better. We recently welcomed a beautiful baby girl into the world and she had eb. Similarly she developed blisters on her bum just after she was born a few weeks ago and now she had to have her hands and feet bandaged. What subtype it eb does your boys have? Many thanks and best wishes :)
@@lorenataga326 My 2 sons have ebs and were told there were a few subgroups of that type. They also said rubbing and causing an injury then testing the fluid would help pin point the exact type but we always opted out of the procedure. They are 7 and 12 now. Is this how they tested your family? I have looked at the definitions of the sub groups but found that they have symptoms from all of them.
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I have EB simplex. When I was expecting our first child, my mother in law prayed that the condition would not pass down, and it hasn’t. I am so grateful, I would gladly bear this condition for the rest of my life in gratitude for this reprieve. God is good to me, he gives me the strength to endure the pain and he gives my husband patience to care for me when I am disabled by it.
Thanks for sharing. It is a very difficult journey. I am so glad to hear of your gratitude and resilience. Praying for a miracle for you!
Thank you for this video. I have EB and im 19 in Oklahoma and doctors didnt help me when I was born. They actually wanted to put me in a "study/lab experiment" and I wont ever forget reading the papers it called me a subject and a thing. Its been a struggle but its inspiring to see this so thank you very much.
Im 16, recently moved to Colorado - Before living in New Mexico and no doctor or dermatologist has helped me. I went through a period of extreme breakout that lasted for what felt like forever and suffered through it because they looked at me like I was nothing and nothing could be done. I tried my best to take care of it all myself - as my dad couldn't do anything and my mom wasn't in my life at the time. Very hard. Especially when doctors don't look at you as anything more than a subject and I was heartbroken.
Wish For Death They want to take a piece of my skin and photo graph me, and then I just said fuck it I'm out and I don't even know what kind of EB I have!
I have EB simplex and this touched my heart because I remember the pain. Had as a kid :( not being able to wear cute shoes, not being able to attend PE because it physically hurt me. The stares. Nobody understood it. promise it gets better when you get older, calluses seem gross but they actually help act as a barrier and you find methods that work. It’s painful but God doesn’t give us anything that we cant handle! God bless you! It already breaks my heart knowing my children will have it but I’m praying for healing! ❤️❤️
thanks for reaching out. It is challenging, i remember the same things as a kid happening to me. How are you now? as you have got older? do you have kids yet?
I have exactly the same story. Just as a boy😄
@@engin2222so you guys got cured??
I'm literally in tears with watching this ! Thank you for this video ! My God son has been diagnosed with EB after watching this I have so much more hope for him to be able to do what he desires to do , we are from New Jersey , USA before him I have never heard of this condition! I would love for my bestfriend to be able to speak with other families that are dealing with this condition ! Thank you so much .
Hi Briana, thanks for reaching out... its a painful condition to have and also to watch someone have it... bravery is what you will see emerge.... I'm happy to speak with the family... my email is brenden.brown@hillsong.com ... they can reach out and we can talk from there.... i would encourage you to check out our church in Jersey hillsong.com/nyc/new-jersey/ , my good friends Matt & Lindsey Bartgis are campus pastors there. Blessings Brenden
Thank you sooo much for making this video and putting it out there for others to see. Have recently welcomed a beautiful son into the world who has EB Simplex and it's so reassuring that there's support for families like ours. Wishing your wonderful family all the best ☺️ thank you x
+Angela Bradley Hey Angela, thank for your encouragement.. where are you guys living? feel free to share this and help spread the word...together believing we can find a cure
Hello! I hope you and your beautiful family are doing well. We're in Sydney. Where abouts are you? Kind regards Angela
Angela Bradley
I also have EBS and up until this video have only ever really seen videos on the more severe forms of EB. I relate to so much of this video and would never wish the pain upon anyone. Along with me, my dad and uncle have EBS as well. You’re family seems amazing and I hope nothing but the best for you all!
Cara Zortman
Hey Cara, Thanks for the message. Its a challenging condition and i think its very hard for anyone to understand the pain.. hope they find a cure soon... stay strong. God bless
I’m originally from Gran Canaria (Spain) and I suffer from epidermolysis bullosa simplex as my sister and my dad . My childhood was very painful but as I born with the illness I never knew any different. In 2003 I moved to UK to improve my English speaking levels and I was surprised to notice that I barely suffer from my condition. Now I work running restaurants and I’m on my feet’s 12-13 hours a day. I have come to the conclusion that ( at least for me ) living in a cold weather country is the best option to live pain free and almost illness free . I hope that this comment helps a lot of people with the same illness. Best of luck to you all .
Yes thats what we found too. Living in colder climate helps with this condition. Believing for a cure with you.
Thank you so much for making this video, I'm a 13 year old in Maine and all my family members have EB simplex including me, ranging from my great grandmother to everyone until me. I can relate to much of this video and it has helped me realize that it's not just my family going through this and that I shouldn't be ashamed of it.
Hi Margaret... I understand the pain that comes with this condition... you are very brave.... we to have it stem from our grandmother... with my aunties, uncles, cousins also having it... praying for strength for you. God bless
I have EB too but I dont know which kind because I dont want to give a piece of my skin to doctor, but yeah I'm all right and I also want to be a soldier. Anyway I'm gonna be 18 soon.
Your not alone i have ebs skin condition i have 2 big 2nd degree burns on my feet and 5 each on both hands i subcribe to you. If you ever want to relate find me on Facebook same pic as youtube ashley combs your children are strong and the fact that they still do what others do this made me cry cause i was put in foster care because people told dhhr that we was being abused and burned with cigarettes they seperated my family intirely at the age of 13 i was completely alone in the eb journey im now 24 i work everyday ive been forced to leave work because someone called health department and said i had a contiguous disease. Ive been through this for a reason our eb is to teach others it okay to look a little different and it inly makes you care so much more for others
So sorry to hear of this hard journey. Praying for a cure and hope you are doing well.
@@brendenbrownofficial thank you so much honestly I love who I am skin disorder and all I do not wanr to change it about myself. I'm proud of it because it's made me more open minded and I couldn't imagine the person I'd be but I'm sure she wouldn't be as beautiful soul wise as I am.
I don’t have eb but this touched me so much
God bless you David
YESTERDAY, I ATTENDED A FAMILY FRIEND’S BABY GIRL’S FUNERAL. SO SAD 😞 SHE JUST CELEBRATED HER 1ST BIRTHDAY LAST MONTH & SHE SPENT 8 MONTHS IN THE HOSPITAL. SHE HAD EPIDERMOLYSIS BULLOSA. TURNS OUT THAT BOTH PARENTS HAVE THE DEFECTIVE GENE. THEY NEVER KNEW. S.I.P. BABY ANAYA 🌹
so sorry to hear this. its such a tragic condition. May their family find peace and comfort in this time.
Please try Avmacol. There is a mouse study 2007 that shows sulforaphane ameliorates EBS by upregulating Keratin17. It may substitute the functional loss of Keratin genes lost.
Thanks for the advice. Appreciate it
I can relate so much omg. I’m 14 from California and my most of my family has ended simplex version, and it’s been tough. I’m so glad that it’s going away as I get older but this really touched me
it is a tough journey. I have learned that it makes you more compassionate towards others in pain. Keep going you are brave.
God is Good ❤️❤️❤️
amen yes he is
This has nothing to do with God. There is a lot of suffering in the world and yet I don't see "God" offering those people mercy.
lizett Alvarado have faith ❤️
ive got 4 granddaughters with eb, they are the bravest girls in the world so I know how the browns feel.
Sorry to hear this. it's a tough journey. Praying for you all
We have the same family last name and the same skin disorder... Distant relative?
Collin this is uncanny... who knows? where are you from?
This video has made our family feel 10x better. We recently welcomed a beautiful baby girl into the world and she had eb. Similarly she developed blisters on her bum just after she was born a few weeks ago and now she had to have her hands and feet bandaged. What subtype it eb does your boys have? Many thanks and best wishes :)
Hope all is well. Hows your baby girl doing now? Have you been able to learn how to care for her wounds? Here to help if you need.
Hi! Wich subtype of eb is your boy?
Simplex
Hi! I know,but wich subtype because my son have Ebs DM
@@lorenataga326 My 2 sons have ebs and were told there were a few subgroups of that type. They also said rubbing and causing an injury then testing the fluid would help pin point the exact type but we always opted out of the procedure. They are 7 and 12 now. Is this how they tested your family? I have looked at the definitions of the sub groups but found that they have symptoms from all of them.