Re: My Update As Of 09/28/2017

Well please post the results of the Triamcinolone acetonide Injection. I dont want to sound pessimistic but i think that Accutane just damaged our body internal and our brain doesn't understand how to reproduce healthy skin on our lips.

Im not saying visiting Dermatologist is a waste of time but on the other hand i think we only can manage the condition as good as possible and live our life somehow.

The issue with rare skin conditions is that the pharmaceutical industry wont do research and try to cure these conditions because there are just a few who are affected and it wont give them enough money to pay for the research costs. Its all about money and no one gives a single f*** about EC. Even treatments for Vitiligo are still almost non-existent, because no one actually invests money to do proper research and thats way more common than EC. That being said i think some steroid cremes or weird "experiments" wont cure this all of a sudden. This condition is so complex and needs years of research and real medication that is actually made for it. Something that unfortunately no one will provide.

So we have to find products to cover up or hide the symptoms. Thats all we can do Tweet