10-14-2008, 12:05 PM
I've just been noticing how you are from all corners of the earth - is that due to the rarity of Lupus? Great that you have all found each other here.
10-14-2008, 08:30 PM
I dont know how rare lupus is. I do agree that this meeting place is great. I have been on here so much lately that I had forgotten that it could be considered rare. My friend tells me that I have started diagnosing everyone with a problem with lupus in order to cope with the fact that I have it she may be right. I have started to feel like the people here are my neighbors so I guess I havent thought about how few people get diagnosed with it. Sounds like I need to get back to reality soon. hehehe
According to the Lupus Foundation of America, approximately 1.5 million people in the U.S. have been diagnosed with Lupus. They believe around 16,000 new cases are reported here each year.
Those numbers do not include those who are either undiagnosed, or misdiagnosed. Nor do they include other regions or countries. This is only my opinion, but I believe the number of people worldwide who have the disease is grossly underestimated and under-reported.
If you look at the nationalities of our members here, Sara is right about the fact that we come from all corners of the world. I'm from New England in the USA, others are from California, Texas and most every state in between. Internationally we have people from Canada, Jamaica, South Africa, the U.K. and many, many other countries and regions.
In the bigger picture, I don't believe that Lupus is rare at all. But, it's not a disease most people know about. Even a significant number of people in the healthcare industry are for the most part, unaware of the disease and it's symptoms beyond the basics. So, sadly, I think Lupus is not rare at all. Hopefully one day people's awareness can be such that this disease can recieve the attention it needs in order to have more research conducted, and maybe someday, a cure can be found. I wish Lupus really was rare, maybe someday it will be.
10-15-2008, 02:12 AM
I agree with rob,
I think it's far more common then one would think. I never heard of lupus untill the 1980's and then it was just whispered about and misunderstood. I certainly didn't know anyone with lupus! Cept my mother and my sister and at the time we didn't know that's what they had. It would many years later before THAT came out.
I think back to all the people who were labeled as whiners and complainers or just plain lazy. It breaks my heart to think they suffered alone and unbelieved.
It burns me when I hear medical professionals complain about the little old ladies that come with their lists of complaints "just because they are lonely"
I'm sure "some" of that does happen....but I bet most of it is quite real and they do not take it seriously.