The story of Holly
It struck suddenly and changed my life. One peaceful evening I began vomiting blood. After being released from the emergency room, I spent the next 3 days in agonizing pain; not even able to swallow my own saliva. In those 3 days I lost 15lbs as swallowing was impossible. Upon a visit to a ENT doctor who said he could find nothing that would account for my symptoms; I was introduced to a gastroenterologist who hospitalized me that same day. After an endoscopy, I received the diagnosis of bullous pemphigoid of the esophagus or Esophageal Cicatricial Pemphigoid. The pictures from the endoscopy were horrifying – massive blistering of the esophagus – it looked like the surface of Mars – all craters and redness. I had 2 more episodes in the next 1.5 years – each time my esophagus had to have time to heal the pain could be excruciating- so very few solid foods. My weight plummeted to 99lbs. Steroids did not work – in fact I found I was too sensitive to the steroid to continue that treatment. Though I have not had a relapse in 10 years, I am always fearful that a paper cut, cold or dental procedures will bring on a relapse.