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!
When I was diagnosed in 2013 I was told there were approximately 200 worldwide diagnosed. My specialist acknowledged there were probably more people that had been undiagnosed or had been wrongly diagnosed with something else due to the rarity. Orphanet states 2-10 cases per million people. There are roughly 7 billion people in the world, so that would mean 14,000-70,000 people (if my maths is correct!). A friend of mine recently mapped a group of 56 of us that communicate on Facebook and it was interesting to note that there was no-one from Russia, Asia, Africa and South America. I doubt anyone in third world countries are being diagnosed.
What I do know is that it is rare and it is difficult to get much information about it. What information we do get is in medical terminology making it difficult to understand fully. It would be great to find stuff in layman’s terms. The best information I get is from other sufferers. There are differences in our cases but many similarities as well. Other sufferers also give me hope of living longer than my specialists have advised they give a more positive outlook than the medical reports.
Yeah, I saw the numbers Barb quoted when I searched this weekend. It is very rare. One thing to note is that it’s the number of new cases per year, not the number of people that currently have it. I believe it said 2 to 10 per million have either PM or DM myopathies, and 20 to 40 percent of those have antisynthatase antibodies. So a city of 1 million would have 2 to 10 new cases of PM or DM myopathies per year, and roughly a third of those would have antisynthatase antibodies (or about 1 to 3 cases per year).