Epidermolysis bullosa (EB) or Butterfly Skin is a disease of very low prevalence, which is part of the group of so-called “rare diseases”.
Rare or orphan diseases are those that affect less than 1 in 2000 people and in most cases are rare genetic diseases that debut in childhood.
Epidermolysis bullosa (EB) refers to a group of hereditary diseases with diverse presentation from milder to more severe forms, affecting the skin and mucous membranes and involving the formation of blisters and vesicles after minimal trauma, with variable involvement of other organs.
There is no specific treatment, and its progression is chronic, and it can reduce the quality of life of patients and their survival, which is a challenge for those affected, their families and the professionals who care for them.
Although some of the types improve with age, the prognosis can become severe, depending on the severity of complications.
TUDERMAONLINE is a solidarity company that collaborates with the donation of 1% of the sale of its products to the Butterfly Skin Association DEBRA SPAIN.
TheButterfly Skin Association Debra Spain is a non-profit association that works day by day with those affected by Butterfly Skin. It offers free support at all levels: nursing, psychology, training, materials, events and support groups.
We dermatologists are very sensitive to the following diseases Epidermolysis bullosa as patients need frequent visits to the office to solve the frequent complications. We also feel the pain of the patient and family as well as the lack of existing resources for their care.