What is epidermolysis bullosa? 'Butterfly boy' dies due to the rare skin condition. [Representational Image]Creative Commons

A Canadian teen, who acquired a rare and painful skin disease known as epidermolysis bullosa (EB) passed away Wednesday at the age of 17.

Tina Boileau, mother of Jonathan Pitre, who is known as Butterfly Boy, informed about his death Friday in a Facebook post.

"Jonny's story has been made very public over the last few years as he invited you into his life and his daily struggles with EB as he tirelessly fought to raise awareness for this horrific disease," Boileau wrote. "I am proud to say you did it Jonny boy!"

His loss was mourned by his Ottawa community and the National Hockey League's Ottawa Senators. The teen was an enthusiastic fan of the Senators, and they took him under their wing and made him an official team scout, NewsMax reported.

The rare condition that took the life of the teen causes fragile and blistering skin just like a butterfly's wings. According to Mayo Clinic, the blisters might appear due to a minor injury, from heat, scratching, rubbing, or adhesive tape.

Types of epidermolysis bullosa

There are three main types of the disease, epidermolysis bullosa simplex dystrophic epidermolysis bullosa and junctional epidermolysis bullosa.

Epidermolysis bullosa simplex is the most common form, affecting mainly the palms and the feet. The blisters usually heal without scarring.

Junctional epidermolysis bullosa is a severe type where with blisters begins in infancy. A baby suffering from the condition may develop a hoarse-sounding cry or scarring of the vocal cords.

Dystrophic EB is related to a flaw in the gene that helps in producing a type of collagen. Since it provides strength to the skin layers, if the substance is missing or doesn't function, the layers of the skin won't properly join.


The signs and symptoms of epidermolysis bullosa vary depending on its type. However, it mostly includes, fragile skin that blisters easily occurring mostly on hands and feet, blisters on hand and mouth, tiny pimples or white skin bumps, itchy, painful skin, hair loss, difficulty in swallowing, and dental problems.


Epidermolysis bullosa is usually inherited, either passed on from one parent who has the disease or from both parents. It may also arise as a new mutation in the person affected.

Risk factors

The risk factor of epidermolysis bullosa is more if there's any family history of developing the disease.


Prevention of EB is not possible, but one can take steps to prevent blisters and infection.


The condition can cause a number of complications such as sepsis, constipation, skin cancer, a fusion of fingers, dental problems and even death.