I have ELP. So far, I have had 18 EGD's and esophageal dilations due to severe stricturization of the esophagus. It took me 18 years to get diagnosed, because it is so rare. My new doctor at U of MI hospital says there are about 80 cases in the world, and he specializes in ELP. There is no cure for it. It made me deaf. Took away my sense o of smell and taste. It ate my hair down to the skull, started to erode the bone between the sinus cavity and the cranial vault. It affected my fingernails and toenails. I had blisters and lesions all over my legs. It also affected my breathing and grew polyps in my sinus requiring surgery. However, immunosuppresants help, but can have serious side effects. Cellcept curbed my ELP, but made me diabetic, cranked my blood pressure, gave me acid diarrhea, etc. I was taken off of it, but it arrested my ELP from 2018- 2023. I am now using Olumniant since January. It's helping. Less side effects. But immunosuppressants seem to take a long time for them to work with ELP, but so far I am pleased. Work of caution. Despite self distancing for years, I somehow caught an infection. It paralyzed me and I was rushed to the hospital. It required leg surgery. I was told I had had a septic infection, probably due to the immunosuppressant. I started gaining a tremendous amount of weight. 20 lbs a month. That' was they told me that I have acute heart failure, but they don't know what caused it, but the hospital had not caught it earlier because they didn't check the heart during the infection. Up to then, I had had a history of having a strong heart.