Butterfly skin, a rare disease that causes extreme skin fragility

Did you know about the existence of this disease?

BUTTERFLY SKIN is a rare disease that causes extreme skin fragility. Due to a genetic mutation, the “glue” that binds the various layers of the skin fails, causing it to detach and break at the slightest touch. Even a hug can harm them… There is no cure for this disease.

The care required by children with butterfly skin from birth is very thorough and is fundamental in the evolution of the skin lesions. Daily treatments can take up to two or three hours and the equipment needed to perform them properly is very expensive.

Children with butterfly skin often present complications such as infections, mucosal involvement or limited joint mobility due to scarring. Collaboration between the patient, family, nurses and dermatologists is essential to prevent and treat the possible complications of this disease.

Everyday activities such as dressing, writing or even walking can be very difficult, generating a high degree of disability and dependence.

The psychological impact of Butterfly Skin can be devastating for both the sufferer and his or her family, causing emotional reactions of anger, rage and sadness as well as problems of stress, anxiety, intense fear, depression or decreased self-esteem.

1 in 227 people are unknowingly carriers of the disease…

The Debra Butterfly Skin Association is a non-profit organization, declared of Public Utility, founded by the parents of an affected baby to support and accompany other families in the same situation. Its mission is to improve the quality of life of Piel de Mariposa families.

Dermatologists are very sensitive to this disease because 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.

We would also like to inform you that Tuesday, October 25 is International Butterfly Skin Day. A day in which they put all their efforts to make themselves known. That’s why, this October 25th, we will be there to support you!