During a year, persons suffering from epidermolysis bullosa, also called the butterfly disease, sought help from the authorities in obtaining the necessary bandage that could not be found in the country. Last autumn, the Health Ministry held the first tender contest for purchasing dressing. But the acquisition satisfies only two treatment positions of the 30 needed.
Contacted by IPN, the head of the NGO “Debra Moldova” Eugen Brad said that until 2011, nobody knew that there are such persons in Moldova. Epidermolysis bullosa (EB) is a rare inherited skin disease that is characterized by the development of blisters following minimal pressure to the skin. Blistering often appears in infancy in response to simply being held or handled. In rarer forms of the disorder, EB can be life-threatening. There is no cure for the disorder. Treatment focuses on preventing and treating wounds and infection.
“In September 2011, we registered the association “Debra Moldova” so as to make the people suffering from this disease heard. Until the Health Ministry purchased bandage, many persons with the butterfly disease laid in bed with unbearable pain because they were not bandaged correctly,” said Eugen Brad, who also suffers from epidermolysis bullosa.
According to him, in Moldova, there are no specialists and instruments needed for these persons to benefit from dental treatment. Another problem is the unguents prescribed to them. Those made in Moldova are of a poor quality, while those made abroad are not brought into the country. “When surgery is needed urgently, the relatives have to gather money through fundraising campaigns as such operations are not performed in Moldova. There is no dermatologist specialized in epidermolysis bullosa in Moldova,” said Eugen Brad.
The association “Debra Moldova” has 23 members who all suffer form epidermolysis bullosa. A charity concert will be held in “Dendrariu” Park in Buiucani district of Chisinau on May 25 and 26 to collect funds for persons with the butterfly disease.
