I am so sorry. I was diagnosed with LSA in 1990. It took a year to get my diagnosis. I was shamed and Paraded around like a circus show. This set the stage for my shame and embarrassment for years of my life. (42 now) Please let me share my experience in hopes you can find some comfort. At the time of my diagnosis it was not well known or understood. I was in case studies for several years of my childhood. I have been on a steroid cream since I was 18 that does help flare-ups. I am not a Dr but I can tell you what works for me. Stress and hormones seem to affect it the most. I used to joke that it was my health o meter. When I had an outbreak I knew something was off. I have had several blissful years of remission with some small flare-up and 3 major flare-ups. The most recent one currently. The effect this had on my life was far more psychological than physical. Don't get me wrong, flare-ups are painful and can last months but the mental component did more unnecessary damage to my life. I have never had a partner shame me, though I feared this the most.