This Is The Story Of The Butterfly Boy – A Teen Who Has The Most Painful Skin Disease


It’s terrifying that there are many diseases in the world that makes its patient suffer too much. As an average Joe, I am only aware of those common illnesses like flus, cancers, tumors, and others. However, there are more illnesses out there that could make anyone feel weak. There are sicknesses that could make even the hardest and the strongest person kneel down with pain. Such disease is the Epidermolysis Bullosa.

I bet that this you never heard of disease yet. Only 9 per 1 million people have EB. And it’s considered as one of the most painful conditions ever in the medical field. Just the sound of it makes you feel uneasy, huh?

So what makes this Epidermolysis Bullosa so frightening? What makes it so “painful”? Why is it considered as one of the most dreadful diseases of all time?

This is because when you have EB, your skin develops blisters and wounds easily. Even the slightest touch could break your skin. And for the record, these blisters that you’ll be having are chronical, which means that you’ll be having that permanently.

Meet Jonathan Pitre, 14-years-old hockey fan who was born with EB. Unlike us, his bath usually takes 3-4 hours to finish. He needs to replace his bandages regularly to keep his skin clean and infection-free. And with this pain wearing him every day, you could really feel how hard it is to have EB.

His doctors told him that Jonathan can only last until 25 years old. Yep, even the idea of you not able to live your life in the fullest can emotionally and mentally harm you.

But yet, Jonathan is as strong and as resilient as anyone could be.

Jonathan, stay strong! We will be here for you no matter what happens! And we truly hope that you can serve as a role model that can give hope to all those people who suffer from any kinds of disease.

This video article was submitted to us by Marko Thalber!

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