Going in circles.

I've had ties in the HS community for a couple years now, but in the past couple months, I've reached out to many people, and I'm so glad I have, although, my heart is as heavy as its ever been. I reach out to people because I remember what I felt like before I had support and it was a lonely, confusing place and I reach out to people because I remember how incredible it felt to finally have someone who truly understood what I was going through. I truly love everyone in the HS community, they are a support to me that I desperately need. However, it is extremely overwhelming to realize how many suffer, and how this disease seems to be getting worse and worse and I don't understand why. Am I just realizing how bad its been all along? It seems to me I'm hearing of more and more stage 3, crippling HS, and younger and younger children suffering. I just communicated with a woman who's son is only 14 years old, and is stage 3, at 14, and not only does he suffer from this debilitating disease he is also autistic. My heart hurts, my heart hurts to hear about this child "young man", and it hurts more because this is 1 I know of, which means there are hundreds of others. When will people take this seriously? It seems this disease is progressing ( I may be wrong ), when is enough, enough? When will it become important/prevalent enough that someone does something? My frustration is overwhelming me, and being overwhelmed is frustrating me. So again, I go in circles with this disease.