Tuesday, March 7, 2017 1:44:41 PM
By: Kaveh Taheri
Warning: The following heartbreaking images may be disturb audiences!
The IRGC-run Fras News agency sore report unveils excruciating life of children who have been diagnosed with Epidermolysis Bullosa (E B). The children are deprived of special medical treatment due to poverty of their families, however, there is no state-backed support the butterfly kids, the agency added. These poor children live in a marginalized village Zehklout in south of Kerman province.
Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder. There is no any treatment or cure, and internal organs and bodily systems can also be seriously affected by the disease. Epidermolysis Bullosa is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30.
This is one of the most difficult to treat disorders and a very painful disorder and the kids should be getting special medical care as well as their personal belongings must be sterilized.
EB DISEASE IS NOT CONTAGIOUS. EB is an inherited genetic disease, not a contagious one. Children are born with EB because of a mistake in one of the genes that make skin protein. EB cannot be transmitted/developed due to exposure.
This painful disease has no cure, but it can be prevented, and specialists can help patients decide how to stop ongoing flare-ups.
"Epidermolysis bullosa refers to a group of three genetic disorders, all of which share one fundamental symptom: extremely fragile skin that blisters or tears from trauma. Caused by mutations in the collagen VII gene, EB blocks the body’s natural production of the collagen protein – an important component of mammalian connective tissues", Fox News described the rare disease.