ANA Discussion Forum
General Category => AN Issues => Topic started by: andrea in slc on September 25, 2008, 09:48:34 am
-
I just found out that a former co-worker of mine had his AN surgery in 1999. So this makes 2 other people besides myself that I know of here in Salt Lake City? It's not THAT big a city, maybe 1.5 million people? And I know 3 (including me) that have or have had an AN? Wierd! I think the numbers are skewed on rarity.
-
There was a thread about this the other week, i have had my AN removed , and since then i found out the woman who lives round the corner from me has one, and a guy she works with has one, my local mp had one removed the list goes on and on, and i think alot of people have AN and dont know about it.
-
I asked the same question a week or so ago....its rare..we are an elite group
-
I think what constitutes "rarity" in medical circles, and what we think of as "rare" is different. I know that's true for me. I always thought of a "rare disease" as some obscure tropical thing! Acoustic Neuroma is listed under the rare diseases as it isn't "common" amongst the general population. The ANA says that 2000 to 3000 cases a year are diagnosed. Maybe they will one day up that figure, but even if they double it, it still is somewhat rare, by medical standards. I took this off of the Internet. (So it must be true, right? ;) These were good sources!)
A rare disease (sometimes known as an orphan disease) has such a low prevalence in a population that a doctor in a busy general practice would not expect to see more than one case a year.* Rare diseases, including those of genetic origin, are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.
As a guide, low prevalence is taken as prevalence of fewer than 5 per 10,000 in the community.
The NIH's Office of Rare Diseases states that, "an orphan or rare disease is generally considered to have a prevalence of fewer than 200,000 affected individuals
Rare diseases are usually chronic. Those that are diagnosed are often life-threatening; less severe rare illnesses are seldom properly diagnosed. Eurordis estimates that at least 80% of them have identified genetic origins. Other rare diseases are the result of infections and allergies or due to degenerative and proliferative causes. Symptoms of some rare diseases may appear at birth or in childhood, whereas others only appear once adulthood is reached.
Also this:
The Rare Disease Act of 2002 (HR 4013) and the US Orphan Drug Act define a rare disease or condition as one that "(A) affects less than 200,000 persons in the United States, or (B) affects more than 200,000 in the United States and for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from sales in the United States of such drug." Statistically speaking, with a population of 287,400,000, that means roughly .07% of the US population
So, in the US, if 3000 people a year are diagnosed, then 3000 x say 70 years is 210,000 people . 4000 x 70 years is 280,000 people. If that number were 10,000 a year that would be 700,000 people. A lot of people, but still a small percentage of the population. These numbers are a bit more than the 200,000 mentioned earlier, but still, it's close. As a comparison:
Prevalence of Diagnosed and Undiagnosed Diabetes in the United States, All Ages, 2007
Total: 23.6 million peopleâ€â€7.8 percent of the populationâ€â€have diabetes. Compare that to the approx. 0.7% for AN's!
[/b]
Obviously some people are going to run into others with AN. I've never heard of it before and never knew of anybody who'd had it. Nobody in my family or friends had ever heard of it.
*I went to two different audiologists over the last few years. One had never before had an AN patient. And she was an older woman. She was most intrigued. My eye doctor was fascinated and really looked over my chart, my dentist was curious about it, and my ENT misdiagnosed me, which is a story I've heard on here more than once, that's for sure.
Anyway, this is my 2 cents, for what it's worth. And I'm not good with math, so please correct me if I'm too far off the numbers, but I gotta get a point or two for bringing up statistics and trying anyway! ;D
Sue in Vancouver
-
I personally dont think its common but I also dont think its "rare". I believe many more people have AN's & just dont know.
-
That's very true. The only statistics are on diagnosed AN's. Many AN's have been discovered at autopsies, I have heard. As long as it causes no trouble, how are you going to know it's even in there? I'm sure we all die with undiagnosed "stuff" inside of us. Ewwwwww! There's a thought. :o
Also, now that medical science has gotten us the MRI machines, some are being discovered while being scanned for something else.
But still, we are in the minority. I think of it this way....every year the Portland Convention Center holds a day long event for Diabetes patients to learn about things and products and such. I'm sure several thousand people show up there during the day. Last summer there was a picnic for the local AN support group and it was held in someone's back yard.
We're like that motto: The Few, The Proud, The Marines.
Sue in Vancouver,USA
-
Sue,
You get 100 bonus points for doing the math! :D
While it seems like there are a lot of us here, and we do sometimes run into someone else with an AN - in the big picture, there still aren't a lot of us out there. We are truly elite! I think your convention center vs. back yard story helps to put it into perspective.
Lori
-
Thank Lorl! I think about that once in a while. I'm at a busy Costco and I'll wonder if anybody else running around here has an AN. Probably nobody else. But, as a diabetic, I would be willing to bet actual money that there were other diabetics there too.
But it makes you wonder when you suddenly hear about 3 or 4 or more in the same area all of a sudden.
Sue in Vancouver USA
-
I have run into a person or two through friends of friends that had an AN, but my ENT told me that I was the first he had seen/diagnosed in 10 years!
-
It is kind of the same thing with a "Molar" pregnancy. I had one & was told that it was SO rare, but I have heard of others with that - even my own SIL had one after me...I'm telling you, all these people that try to be like me...my SIL and then my mom got a VERY severe cause of BP that affected her balance and she still has some residule face paralyzation too (nothing like mine but still bothers her) - I told her she just wanted to look like me! Geesh! You'd think I had done enough to be different!! ;D JUST KIDDING!!!
K
-
The specialist that I visited recently quoted 1:16 are diagnosed with breast cancer and 1:1000 are diagnosed with AN. I don't know how correct the information is but visiting the forum over the past month or so suggests there are new members joining daily which surprised me.
I just love the quote "It's not THAT big a city, maybe 1.5 million people" where I come from that's big; I think I need to travel O/S. (my dream)
Kimbo
Have a good day (spring is here in Aussie and its feels good)
-
Obviously, 'rare' is a relative term.
Because so many people are diagnosed with everything from influenza to cancer every year, an acoustic neuroma diagnosis remains 'rare'. Some physicians never see one, others see them more often. AN remains rare in the general population.
Jim
-
ANs are rather rare - lots of my docs (not my neurotologist or neurosurgeon obviously) have never seen a patient with one. I also remember Sam Rush saying he's only diagnosed one in his medical career and I think he's going to be 65 soon.
As someone said, the number of undiagnosed ANs - or ANs that aren't diagnosed correctly - adds to the rarity of them. There are probably more of them "out there" than we know.
BTW, K, I have heard of a molar pregnancy - I believe my cousin had one years ago.
Jan
-
LOL, I meant Salt Lake isn't THAT big in comparison to say Los Angelos, or New York, London, Sydney, BIG cities. It's big enough, thank you, with the stinking traffic to go with it. ::) I love being able to work at home and not have to deal with that crap.
Hmmm, so it's "rare" but not unheard of then. Sigh. Gee, how did we all get to be so lucky? ::) ::) ::)
-
We are not only "lucky", we are "unique" and "special" ;)
Jan
-
I was the first one my EENT had seen last year and I was diagnosed in July. Interestingly enough the scheduler for the practice mentioned that AN's in that practice occur in groups. She'd scheduled surgeries for 3 AN patients in the weeks before me but none since Feb. I just was happy my surgeons had had a chacne to practice on three other people before me (ain't that evil of me).
The first EENT referred me to one of his partners who specializes in ANs.
Donna from Charlotte
-
Hi Everyone,
I was told by my ENT that he sees maybe 3 people a year who are diagnosed with an AN. When I went to the dr. here in Houston for my first visit with him, I told him that the HEI had read my MRI and they said I had a petrous meningioma. He told me that was not his take on things, and besides, those are rare anyway. I'm already rare---why can't I be even more rare!!
Mags
-
With more and more newbies...and lots of guests....I'm starting to think that it is becoming more and more common....Everybody should have an MRI scan of the head....I'm sure there would be more newbies if that were to happen.
-
When I went to my PCP and we talked about my AN surgery, she had never known anyone to have an AN before. My ENT who I have to give lots of credit to for ordering the MRI right away, had not seen one in 10 yrs. He also didn't know squat about them, told me that he didn't and suggested that I do some research on the internet until I could went to my appointment with the surgeon. That's how I found this group. ;D
CAthy
-
I've been told AN's occur 1 in 100,000 per head of population. And statistically each GP or PCP (I think that's what you say in the US?) will only see one in their lifetime.
I guess that's pretty rare?!
-
I've been told AN's occur 1 in 100,000 per head of population. And statistically each GP or PCP (I think that's what you say in the US?) will only see one in their lifetime.
I guess that's pretty rare?!
Hi, Joe:
It sure is, although there is a strong suspicion that many more exist but go undetected primarily due to a lack of symptoms and mis-diagnosis.
It's PCP for Primary Care Physician, usually an internist. The GP label is basically defunct now here in the U.S.
Jim