so glad we are seing more about Epidermolysis bullosa. My daughter of 10 years old has EB and it's been a painful journey for us but we as a family try our best to make her smile everyday.
Dr. Jacub Tolar is a special kind of dreamer. He is a healer of bodies and of minds and of spirits who has wondered out loud if he can help a cell teach itself how to cure cancer. It was an honor to work with him on a smaller level and join his cause.
I have the simplex form. I can’t imagine having a worse case of blisters, shocking! No one understands, every doctor thinks they know best…. Only my cousins, sisters, nieces and nephews are sympathetic
The only way it is for us with ebs is if we get infection or skin cancer its always possible but we are lucky and beautiful butterflys and i love you all
It makes us stronger more open minded kind and we know how to deal with wounds remembee theres always positive to negatives its sad but its in are genes i suffer with it and it is very very painful disorder i have ebs
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so glad we are seing more about Epidermolysis bullosa. My daughter of 10 years old has EB and it's been a painful journey for us but we as a family try our best to make her smile everyday.
She isnt alone i have it too
I pray for you and wish you all the best
I am so glad to see this horrific disorder getting publicity and research.
A young lady very dear to me died at sixteen from complications from RDEB.
We need a medical solution soon. God bless you!
Thats my dad, goin off on what he loves!
Dr. Jacub Tolar is a special kind of dreamer. He is a healer of bodies and of minds and of spirits who has wondered out loud if he can help a cell teach itself how to cure cancer.
It was an honor to work with him on a smaller level and join his cause.
This is what I want to work on after finishing my chemical engineering degree. I am so excited to see where Crispr will take us.
This man is a genius.
Such fantastic research!!
I have the simplex form. I can’t imagine having a worse case of blisters, shocking! No one understands, every doctor thinks they know best…. Only my cousins, sisters, nieces and nephews are sympathetic
I have simplex form as well. I get blisters mainly during the summer time and it can be very painful if pop or just poke a needle to drain it.
You guys should do one over Dyskeratosis congenita it’s rare not much research on it and no really know about it
great doctor!
Gracias por ayudar
Hero!!!
I have that :(
Amazing
Czech talent ❤️
Do people with eb mildest form are also deadly?? Is it the same on what it says here? I do have an eb with mildest form
Hey there! I have EBS too. As far as I'm aware the mild form isn't life threatening. :)
it can be, but most likely you are fine!
The only way it is for us with ebs is if we get infection or skin cancer its always possible but we are lucky and beautiful butterflys and i love you all
Sad 😢
It makes us stronger more open minded kind and we know how to deal with wounds remembee theres always positive to negatives its sad but its in are genes i suffer with it and it is very very painful disorder i have ebs
I have this but with the simplex type
so does my brother, mum, uncle and grandmother
@@dolice7745 so does my brother and sister