Adult Experiences with FA organizations
I'm curious what other adults' (both early onset and late onset FA) experiences with and opinions of the various FA organizations are. Do any of them have a large number of FA adults involved, or make consistent efforts to include adult concerns or at least ones that are not exclusively parent-child related, use adult-inclusive language in their materials, etc?
I get that most/all? of the major organizations were founded by parents, and that a higher percentage of children than adults have FA. I get that from a publicity/media POV it's more compelling to focus on kids with LT/ANA FA than adults. But for adults and adult onset, in my experience, it's harder than it needs to be because there seems to be so little out there, and if you're fortunately, knock wood, not ANA so far, you're *really* not on the radar. For me, the early months were confusing and scary enough, even with the help of several adult friends and coworkers with FA or with adult FA relatives. If I hadn't been lucky enough to know people and actually had nowhere to turn but an FA organization,it would have been much, much harder.
I have a feeling that percentages of adults with FA are skewed low and toward more severe cases in the few research studies because most of the adults with FA I know have had FA long enough that they don't join FA groups, don't spend a lot of time with doctors or wondering about clinical trials, or even thinking about FA that much. They just deal, which I'm getting better at doing. But if there were more out there directly relevant to adults, I think some of them would be a lot more likely to step up to support the FA community's efforts to everybody's benefit. Am I missing something here?
(on-off lurker, first time poster with relatively recent adult onset non-ANA TNA/inconclusive PA)