Lilly is a 17-year-old girl who wants to live a normal life but is constantly stressed by her rare skin disease, pemphigus foliaceus. This disease causes blisters which then pop exposing raw skin and scarring all over her body. Lily says it causes a burning sensation and an itchy feeling. She wants to know if this is something she is going to have for the rest of her life and if The Doctors can offer any solutions.
Dermatologist Dr. Sonia Batra invites Lily and her mother Lori to the stage for her to examine Lily. Dr. Batra explains pemphigus foliaceus is an autoimmune condition. It is not contagious, but unfortunately, there is not a cure at this time. The disease causes the body to produce proteins against the top and middle layer of the skin. Antibodies then attack that protein, which causes sheers and those superficial blisters. They often open up and can be doorways for bacteria and infections. Dr. Batra notices a flareup on Lily’s back and asks her if it’s uncomfortable.
Lilly says it is. It’s itchy, it burns and it’s painful. She says even wearing clothing or sleeping is difficult because anything that pushes against the skin causes pain.
Lily has tried medications like prednisone, a steroid, and CellCept. However, Lori explains the medications are expensive and it’s been challenging to continually pay for them. On top of that, the prednisone has been really hard on Lily’s body. Lily says it made her bones hurt which made it difficult to move. She feels weak and fatigued on it and the steroid also led to weight gain. They have tried in the past to tapper Lily off the prednisone, but then the symptoms of pemphigus foliaceus return.
Dr. Batra explains The Doctors want to help with long-term effective maintenance so that Lily is not always dealing with those painful crusted spots on her body. Her olive skin tone shows scarring more than others, so the goal is to prevent the scars from forming in the first place.
Lily needs to have a doctor she can work with continually to very gradually taper off the steroids and make it sustainable to remain on a non-steroid immune suppressive agent. The Doctors reached out to Dylan Senter, the CEO of Spectiv, and he has gifted Lily and her family $5,000 to help toward the cost of her treatment and medication.