our heroes

Our Heroes

In my opinion,

all butterfly patients are heroes … Heroes who are fighting against the most difficult and most painful disease.

You and I, as we sit and eat our evening meal, when we cut our hands we lose control and become angry. Now imagine that butterfly skin patients is born, grows up, studies and plays with these wounds and pains and gradually they lose their hands fingers and toes as they cramp. But that doesn’t stop him from continuing their study, getting graduated, learning computer or playing chess while changing their bandages everyday enduring horrible and unimaginable pain.

In my opinion, real heroes are the butterfly children; those who has lost their fingers but painted the most beautiful paintings for you or draw your portrait with their fists tied.

Now they have gone to university and completed their secondary education without strong limbs and occasionally with visual problems and severe gastrointestinal pains.

And when I ask them why you endured more pain with this disease and the hardships and the terrible pain, you studied, learned driving with your tied fists, played sport and other things while you know that these things can worsen your pains and worsen your wounds, they answer me like real heroes:

“This world belongs to us too and we must try for the maintenance and development of this world.”

Celebrities, singers, athletes, revolutionists and poets and so on might be seen as are the heroes of our world today but I want to introduce you new and unknown heroes; In my opinion, all butterfly patients and butterfly children, along with other international heroes of our today’s world, are the real heroes who must be recognized around the world and we have a duty to make them known to everyone.

Abedin Mahdavi

President and Founder

In the Heroes section of this media, we will work in two parts to tell you about the patients’ real stories, their successes and their activities through the patients themselves and our reporters.

We will also tell you about those patients who lost their lives because of the sanctions against the country providing you with concrete evidence and documents from their families.


If you also know any such hero in your family or in your city suffering from EB,  you can introduce them to us and join us in identifying these heroes.

Please check Our Global Movements , Medicine Donate & Be Our journalist.