Sorry you have to endure this. Sadly, the situation of undiagnosed conditions generally is even larger than the specific condition you’re describing, which only serves to magnify the disproportionate lack of attention.

I found this study helpful. It explores the experience of living without a diagnosis for parents of disabled children. You’ll likely find much of it familiar. It highlights that often, simply finding a label for the condition, as a means to rally attention and support, is a crucial first step. It looks like you’re well on your way.