I'm so sry for posting my question before watching and having it answered. I've gotten used to nothing being about my disease and have to wing it trying to watch other types and get what I can, so I started posting as soon as I come in hoping they actually answer me while I'm still in there (some are very long), sry again. TY for the video.

@@Organicme1 I don't have hypocompementic UV but a very severe form of UV involving multiple organ systems. I come in and out of remission with no obvious reasons as to why. I just spent 6 months with minimal flares to all of a sudden it roaring out of control covering 90 percent of my body, serious digestive issues and joint issues, almost to the point where I cant walk. This is the first one in a while where it feels as if my body is dying. I haven't responded to any medication except Ilaris injections which are upwards of 100,000 a month. The company usually provides with with them but my renewal ran out so I have been without for 4 months now and sadly my quality of life is significantly decreased. You can't find any help or physicians with good bedside manner. If one truly knew the pain associated with the skin part of it alone I believe perhaps more would be willing to help find a solution. I'll be praying for you. Feel free to reach out to me.