Living with a condition as rare as EB must be extremely difficult, even for those with the more common versions that are less extreme. Growing up as a child she mustn't have been able to understand how fragile her skin is. I'm glad she has the opportunity to learn as much as she likes to. 

@lanajacksoniectskin-com It must be very difficult to live with this skin condition. Because of the way bandages adhere to the skin she must never be able to cover her open wounds to protect from infection.

@paigebrickhouseiectskin-com I agree, it's also amazing that she puts herself out there to represent others younger than her who go through the same disorder.

@lanajacksoniectskin-com 

I had not heard of the disease either. She has a strong support system and has lived with this disease all her life. To hear it's terminal is scary.

@lanajacksoniectskin-com 

I had not heard of the disease either. She has a strong support system and has lived with this disease all her life. To hear it's terminal is scary.

@abigailcochraneiectskin-com 

I did not hear of this at all before reading the article. It is genetic so I wonder if there is a way to be tested to see if you have the gene

I do not think I have ever heard of this disorder but I am happy for her to find happiness out of it and make an inspiration out of it. It's better to live your life happy and make the best out of it then make it more hard on yourself. 

@tristasensemaniectskin-com Having a great support system is a major key for everything.

@cameranriddleiectskin-com Yes! I am the most clumsiest person ever.

This is so scary, I can't imagine the pain of any friction or trauma to the skin causing blisters. I have seen something like this before, but to understand a skin disorder like this is so different. 

@student I agree, learning and educating others on this is so important as well as any other disorders or conditions. Having awareness of conditions like this is great to have especially when you're in the skin care field.

@emmamidgettiectskin-com I am also super clumsy, having a skin disorder like this would be horrible

I have seen a couple of people on social media with this condition, most of them so young. It is truly heartbreaking that someone would have to live that way in constant pain.

@deborahwatersiectskin-com It is very scary to hear that it is terminal. Knwoing the outcome of this condition is very sad when you hear a story or see someone with it.

@student I can only relate this to the feeling of having burns and your skin falling off. I ahve had that before but only in a small area, I could not imagine all your over body. My brother recently had 3 degree burns and put a dry bandage over it and when it took it off it peeled skin off with it.

@carliecannestroiectskin-com There are so many people with different skin disorders and we don't think about it much.  When we get a cut, it feels like the worst feeling in the world.  I can only imagine the pain she feels almost every single day.

I like the fact that she's a big voice in her community and that is still living life and bringing awareness to people about the disorder and is part of a club that is looking to help people with the disorder.

@deborahwatersiectskin-com Knowing that an illness is terminal is very stressful and it has to be devastating to think that you're just suffering your entire life and then you die.  Fortunately, I can tell that she still has a positive outlook on like.