Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 17 ,000 births in Bulgaria. There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death.
There are approximately 100 people living in Bulgaria with EB. The DEBRA Bulgaria organization’s goal is to provide holistic and financial support to the parents and caregivers of each and every one of these children.
We, the people involved in Pole Dance, take this disease very personally. We use our skin to stick to the metal surface of the pole. For us bruises are something we are used to and even being proud of, but what would be if we did not have the opportunity to practice our favorite sport?
Deeply touched by the stories of the Butterfly children, the Pole Dance Bulgaria team wishes to support DEBRA Bulgaria by raising awareness and funds to fight Epidermolysis Bullosa (EB). Within the last weekend of June we will support the cause of DEBRA Bulgaria Foundation by training together in the days devoted to the Butterfly children of Bulgaria!
We invite you to a charity weekend in support of Butterfly children, which will take place on 24th and 25th of June in studio “Studentski grad”! All funds collected during the two days will be provided to DEBRA Bulgaria Foundation to help those who suffer of Epidermolysis Bullosa (EB).
Schedule of activities:
Day 1 – Yoga Day – All activities in the yoga hall
Day 2 – Pole Dance Day – All the activities in the Pole Dance Hall
The prizes for charity classes will be standard:
Pole Dance/ Air Acrobatics: 18 BGN
Yoga: 12 BGN
Aerial Yoga: 15 BGN
During the two charity days, the subscription cards will not apply to the classes!
Аddress: 34 А Jaque Nathan str., Studentski Grad
+359 884 607 097
+359 893 693 902
+359 889 595 308
– Email: email@example.com
– Private message on our FB page Poledance Bulgaria.
For more information about DEBRA Bulgaria and if you want to donate:
FACEBOOK: DEBRA Bulgaria
UNITED BULGARIAN BANK