With skin as fragile as “the wings of a butterfly,” she goes through hell

“My skin is as fragile as a butterfly’s wings.” Relayed in The suna 36-year-old young woman talks about her daily life battling a rare genetic disease called “Junctional epidermolysis bullosa (JEB)”.

Junctional epidermolysis bullosa: skin covered with blisters and sores

On a daily basis, his skin is constantly marked and damaged by blisters and sores. Sometimes shreds even come off his body.

“The slightest adhesion or even a bump can blister and break my skin. It’s not just external: I have blisters in my esophageal system, eyes, mouth, gums and other areas as well. Living with it “This illness is complicated, it not only affects me physically but also mentally and emotionally. It’s difficult to find true friendships and relationships in this condition. Some people will judge me or ignore me.” she continues.

Blisters and sores: what is junctional epidermolysis bullosa?

Junctional epidermolysis bullosa usually begins at birth.

“Patients affected by most forms of BEJ require hospitalization in neonatal intensive care due to the severity of the skin lesions and extracutaneous manifestations,” explains the site Orphanet. “They must be monitored and treated for fluid and electrolyte balance, growth retardation, anemia, infectious and respiratory complications, etc.,” can also be read on the site.

Pain management is also extremely important in these patients and often requires opioids. Dermatological treatment involves preventing blisters from forming by meticulously protecting the skin from everyday trauma, incising and draining new blisters, and preventing secondary infections by meticulous wound care.

“Disease phenotypes range from mild to life-threatening. Diagnosis is based on skin biopsy with immunofluorescence or transmission electron microscopy and gene analysis.” complete the MSD.