No one seems to know!
At some point during my researching process, I found, read, or heard through the grapevine that there were only 400 of us. Upon further research and many additional grapevines, I’ve now heard a handful of other numbers – none of which are substantiated in anyway. However, since I shared the 400 number, I thought I’d come back with a “correction” and share all the other possible numbers of people on the planet that also have ASS with me.
I’ve heard/read it could be 1,000 or 14,000 or 49,000 or 70,000 people world-wide. One website even projects that there may be more than 600,000 people, but I’m assuming they mean undiagnosed, which could be the case later on. I know ASS was never on my shortlist, and if I didn’t have awesome doctors, I could very well have been misdiagnosed as so many have been for many years before they got it right.
So, I just wanted to show that if there is wrong information – or if you think I have wrong info on here, please, please, please let me know. I’m no expert here, but let’s face it, I don’t really see any experts coming forward right now. I am just doing the best I can to work out all this new info!