Posted 15 October 2008 - 11:17 AM
Can someone shade light on the statistics?
Posted 15 October 2008 - 05:00 PM
I have only read stats from a few different articles and sites. They only mentioned the approximate number of about 300,000. Have not seen anything other than that. I have read some articles that believe there are more cases of Scleroderma but the people have not been given the diagnosis for what ever reason or mis-diagnosed. It is still considered a rare disease from what I have read. Not sure if the stats are generated by scleroderma alone or if those numbers are inclusive of those with overlap or MCTD. It would be interesting to see if it is all inclusive.
Posted 15 October 2008 - 06:24 PM
Posted 16 October 2008 - 05:20 PM
You pose a good question and it is something I also wonder about. I would like to know where the 300,000 figure originated from. How was that number compiled and taken from what data. Also, I'm curious why it hasn't changed in the last 20 years? I believe that figure is outdated and a new census should be taken to accurately reflect how many people have scleroderma, in the US and all over the world.
Celia, I also heard that there are more people affected with scleroderma than MS. Why does everyone know about MS and not scleroderma?
Posted 17 October 2008 - 09:30 AM
I am all for being rare! I always considered myself unique and could not have lived down having a run of the mill illness, particularly as my identical twin's is even rarer.
I heard that MS and sclero are equally as common but that MS is better funded hence more well known and vice versa. Why I have no idea, who famous has/had MS as I have never heard of anyone in the lime light having/had scleroderma.
Of course if scleroderma was properly diagnosed are numbers would greatly increase. I was told that here in the UK there are only 7000 sufferers then it became 8000 then 7000, someone's being mighty careless losing all these people and yes it's weird that the number of people does not change over the years. If it's been 300,000 in the US for 20 years does that mean one checks in as one checks out?
Personally I think they have no real idea and ought to start counting.
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Posted 18 October 2008 - 07:35 AM
I've heard the 1 in 300,000, also.
However, I LOVE Amanda's take on it
"I am all for being rare! I always considered myself unique and could not have lived down a run o the mill illness, particularly as my identical twin is even rarer".............That's GREAT!!!
Hugs, and have a great weekend everybody!