Shirvani was born with Epidermolysis Bullosa (EB), colloquially referred to as “butterfly skin,” a rare, genetic disorder that robs the skin of its resiliency, making any sort of touch or friction cause unbearably painful, unsightly blistering, tearing, and scarring.  Children born with EB are often called “butterfly babies” because their skin is as delicate as a butterfly’s wings.  Though, Shrivani unabashedly rejects the “butterfly” skin moniker, stating “Butterflies are beautiful and [EB] is anything but ‘beautiful.’ It’s pain, it’s suffering.”  The bubbly, bloody blistering of the skin due to EB resembles those of third-degree burns, making seemingly remedial activities, like opening bottles and soda cans, excruciating and dire and is the common cause of skin cancer in its victims between the ages of 15 and 35.  If infection is left untreated, EB can be fatal in infancy.  Dubbed “the worst disease you didn’t know about” from the inter webs, there is no cure for EB, just daily, painstaking treatment and copious care that aim to avoid skin damage and friction of any kind.  The slightest bit of abrasion can result in blood-filled blisters that oftne lead to a complete tearing-off of the skin, which Shirvani experienced while in labor with her firstborn when her doctor simply covered her stomach with an otherwise soft blanket. Yet, Shirvani has learned to live with her skin’s fate and has proved that living a fulfilled, quality life is not only absolutely achievable, but beautiful beyond her wildest imagination!