Number who have been afflicted with GBS or CIDP

steve,

it used to be 1 in 100k/year. it is now2 in 100k/year. years ago 4 in 100k seemed more reasonable. i no longer follow it close enough to know is a practical # is now 8 in 100k. the amt keeps going up whether from more cases or more gbs i don’t know. little is known or researched abt gbs so it’s as good a guess as anything to figure world wide figures. i think china has a hi rate – can’t remember, you’ll have to check it out. take care. be well.

gene gbs 8-99
in numbers there is strength

No facts from me, just my two cents worth… once you start looking and asking, it seems the numbers just grow and grow. Good luck!

It’s really hard to give a correct number because in third world countries and even here many are not given a diagnosis or treatment. So we will never know the true figures of GBS/CIDP incidents around the world.

Here is the links for a couple of articles that address number per 100,000…

[url]http://qjmed.oxfordjournals.org/cgi/content/abstract/77/2/1297[/url]

Age-Specific Incidence of Guillain-Barré Syndrome in Oxfordshire
1. S. J. WINNER and J. GRIMLEY EVANS
Division of Geriatric Medicine, Nuffield Department of Medicine, University of Oxford, Radcliffe Infirmary Oxford
Accepted for publication 13 June 1990.
The epidemiology of Guillain-Barré syndrome was examined in a population-based retrospective study using defined diagnostic criteria and linked hospital records. Between 1974 and 1986 there were 72 incident cases, giving a crude annual incidence rate (95 per cent confidence interval) of 1.1 per 100 000 persons per year (0.8–1.4). Age-adjusted incidence rates were insignificantly higher for women, 1.23 (0.8–1.6), than for men, 1.0 (0.6–1.3). After infancy, rates increased with age, and remained high in the over-75 age group. These variations in incidence were not explained by variations in severity. There was evidence of an increase in rates over the period surveyed. Rates tended to be higher in the winter and early spring. The incidence of Guillain-Barré syndrome in the elderly has been underestimated in the past, and this study shows no evidence of a previously reported bimodal distribution of age-specific incidence in adult life.

[url]http://jnnp.bmj.com/cgi/content/abstract/65/2/218[/url]

Guillain-Barré syndrome variants in Emilia-Romagna, Italy, 1992-3: incidence, clinical features, and prognosis
1. Emilia-Romagna Study Group on Clinical, Epidemiological Problems in Neurology, (for members see appendix)
Correspondence to: Dr R D’Alessandro, Laboratorio di Neuroepidemiologia. Instituto di Clinica Neurologica, Dell’Università di Bologna, Via Ugo Foscolo 7 (Porta Saragozza, 40123 Bologna, Italy.
Received 24 February 1997 and in revised form 15 January 1998; Accepted 23 January 1998
To estimate the incidence rate of Guillain-Barré syndrome variants in an unselected population and to describe their clinical features and prognosis.
A two year prospective multicentre study on the incidence and prognosis of Guillain-Barré syndrome was performed in Emilia-Romagna, northern Italy (3 909 512 inhabitants). A surveillance system was instituted within the study area, which comprised all the neurological departments, private and public general hospitals, and practising neurologists. The international classification of diseases (ICD) codes 357.XX (any peripheral neuropathy) of hospital discharges were also reviewed.Data were separately analysed for Miller Fisher syndrome and other Guillain-Barré syndrome variants. During the study period 18 patients with Guillain-Barré syndrome variants including seven with Miller Fisher syndrome were recruited; the incidence rates were 0.14/100 000/year (95% confidence interval (95% CI) 0.07-0.25) for Guillain-Barré syndrome variants (excluding Miller Fisher syndrome) and 0.09/100 000/year (95% CI 0.04-0.18) for Miller Fisher syndrome. Guillain-Barré syndrome variants alone (excluding Miller Fisher syndrome) accounted for 10.5% of total cases. Death and relapses were not found. Details of clinical, electrophysiological, and CSF findings of Guillain-Barré syndrome variants are provided. “Guillain-Barré syndrome variants other than Miller Fisher syndrome, as obtained through a population based study, account for about 10% of total cases of Guillain-Barré syndrome and, as a whole, have a good prognosis. Their clinical features are heterogeneous; bifacial weakness (associated with other signs, mainly sensory disturbances) represents the most frequent finding.

j,

thx for the info you found. to clarify for all – the 95% confidence does not mean they are 95% correct in the numbers of gbs cases. it means given the raw data, which could be in great error, the statistic formulas used add a 5% error to the raw data. take care. be well.

gene gbs 8-99
in numbers there is strength

Dear Friends:

From our local support meetings, I have heard that the number of cases of GBS has not been going up or down since statistics have been kept. The steady rate has been one reason researchers believe that GBS is not affected by environmental factors.

I have one concern considering the statistics concerning GBS. I have heard that some doctors believe that a large percentage, perhaps even a majority of cases of GBS, are never diagnosed because the cases never get severe enough to warrant a diagnosis. For a lot of us, GBS was obvious because we had significant impairment. What about all those people that have a little tingling and a little muscle weakness, and not a whole lot more. They may not make it to the doctor’s office, and if they do, the doctor may not think it is serious enough to warrant a lot of expenditures for diagnosis.

I think it is the less serious group which leads to estimates of up to 8 per 100,000 per year while going with actually diagnosed cases brings the numbers down to 1.1 cases per 100,000 per year. The different rates of incidence are using two different criteria.

Lee

I agree Lee. I know a man who had very very similar symptoms to mine around the same time and he never got as bad as I did. his dr sent him home with no Dx and told him to come back in 3 months or if things got worse.

And when I went in for my NCS, the dr told me they had a young girl in the hospital with a bad case who was being taken off the vent.

That is 3 in this area during the past 5 months that I know of. It would be interesting to find out how many more there are in the same time frame. I know the occurances are still low considering the number of people in the area, but would hte numbers be drastically different if we knew how many there have been lately?

Stephen,
The number that you see of 1 in 100,000 is the incidence rate, which is the number of people who are diagnosed with the disease each year. The prevalence is the number of people who have the disease at any one time. Prevalence does not mean the number of people who have ever had the disease. Otherwise, the prevalence of colds would be very nearly 1 in 1.

Dr. Arthur Asbury used the number of 3500 GBS cases in the US each year. That would be an incidence rate of 1.17 per 100,000. However, significant digits would require that we round that to 1.2 per 100,000.

For acute diseases, and in spite of the complications that can follow GBS, it is an acute disease, the incidence rate and the prevalence should be very nearly the same. For chronic diseases, the incidence rate and the prevalence should be very different, roughly the incidence rate times the expected lifetime of a person at the average age of onset. The prevelance rate for significant residuals from acute diseases, like GBS, would be roughly the incidence rate times the expected lifetime at average age of onset times the fraction with significant residuals.

Gene,
A 95% confidence interval means that there is only a 5% chance that the mean of the population is outside the interval. We will have the wrong population if the disease is underdiagnosed. But if it is properly diagnosed, then the number has only a 5% chance of being outside the range. To get to 8 per 100,000, GBS would have to be misdiagnosed 87% of the time.

MarkEns

Hi,

A more interesting fact would be how many do you know who have GBS in your town, family, area. Since I have had GBS two years ago, I have found out about a little girl in my town who had it about the same time I did, an older gentleman in the next town, another lady in my town who had it 20 years ago, my 2nd cousin who lives in PA, I was also visited in the hospital by a woman who had GBS who live in the next town. That is five plus myself. What about you folks? Pretty unusual for a rare disease.

Caroline

i live in a small town of 10,000 people. The local hospital had treated a gentleman with GBS only a month or so before me. My partner went for a check-up with a different doctor to who he usualy sees. When he told him anout my GBS, he said the patient right before had had GBS (i am guessing it may be the same man) I think that is bizarre given the relatively low odds.

Part of the increase, over time, of the statistical numbers for cases of GBS has to do with population increase. General research shows ~2-3 cases/yr for every 100,000 people (and yes, there are MANY variations on this number). Since the disease generally hits people in a certain age range (say, 30-70) and the probabilities change with age within this region, the statistical probabilities are not uniform. Thus, a great deal of research now says that ~10/100,000 people will have GBS during a lifetime, and that number is growing. But also of note is that the population is growing, and people are living longer, so the statistical probability is not static.

Just something to think about. Consider, there are more people alive on the earth today, than have ever died throughout history as we know it.

Good Question I Am Not Aware Of Anyone Near Here That Has Even A Small Idea Of What Gbs/cidp Is I Got To The Local Hospital And Ask Everyone And No One Of The Hospital Staff Can Even Come Up With Anything Close To What This Is!!!!

This is interesting. When I was diagnosed, my doctor didn’t know anything about GBS, another doctor diagnosed me. No one in my small-town hospital knew anything about it, the nurses had never heard of it, and the ones that have heard of it pronounce it “gill (rhymes with dill) ee in” barre. When I say “ghee-yon” barre, they look at me like “poor thing, she doesn’t even know how to say it”. Anyhow, after I got it, people started coming out of the woodwork telling me about a cousin, a sister in law, a friend, or a coworker that had it. I had never heard of it, then suddenly nearly everyone knew someone that had had it! Makes you wonder about that 2 out of 100,000!

[QUOTE=Stephen Carroll]A medical writer who is considering writing an article on GBS wants to know how many people have been afflicted with GBS/CIDP in our nation or the world. The foundation says 2 per 100,000 but is that per year or at some period in their life? Is this rate relevant in calculating worldwide figures? I know in the past that some of you believe the actual incidence of GBS is much higher than the official estimate becaused of inaccurate idagnosis and for other reasons. I would appreicate hearing your responses to such questions.

Steve[/QUOTE]
Please put Miller Fisher in that study – a variant of GBS – it starts at the head and down – a lot of GBS patients get this as well and Drs do not know it.
Miller Fisher attacks the cranal nerve – please help us pass this on as well.

Piano,

Over the past 27 years, I have heard the change in pronounciations many times. When I got GBS in 1979, EVERYONE pronounced it GILL ee in, now everyone pronounces GEE ON. Doesn’t matter to me, just make it go away…..

I came across an article on the prevalence of CIDP in New South Wales, Australia [Ann. Neurol. 1999 Dec;46(6):910-3; PubMed summary: [URL=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10589544&dopt=Citation]). The main conclusion is that the incidence rate was about 0.15 per 100000 and the prevalence was 2.0 per 100000. There could still be geographic effects, like in MS, and ethnic/racial effects, like in diabetes, but the numbers are probably fairly reasonable world-wide. If so, then there are about 120,000 people world-wide with CIDP at any given time.

MarkEns

I asked someone who spoke French the correct pronunciation and she said it was “Ghee N Bear”. So the first time I got it in ’86, I was so frustrated of paying medical bills going from doctor to obnoxious neurologist that I bought a Furskin bear so at least I could see something tangible for the money I was spending. Of course, he was named Ghee N. Bear.

This second time I got GBS in September 06 I found an uncanny number of people who know someone who had it – the newspaper lady, the oil man, the lady I called about using my sick days, my brothers friend, a woman at the hospital complaint dept., a doctor friend, a stock broker, my grief counselor, a teacher – that’s at least NINE people that I needed to call in the last four months that knew someone. WHat is nice is that you don’t have to say another word and they understand what you are going through. WHat is bad is that GBS seems to be getting more and more common.

Steve, do I count as one or two in the study since I had it twice? I had a friend’s ex-wife who was a supervisor of nurses argue that it couldn’t be GBS because you cannot get it twice. So he believed her – who never had it – and didn’t believe me – who had it before and read up on it for twenty years. Go figure. I hate how people think doctors cannot be wrong.

We have been told the correct pronunciation is Ghee on ba ray. of course the spelling is wrong, it’s just the pronunciation

My husband still says ghee leon ba ray. I can’t get him to say it right. LOL
I hear others call it Gillian Ba Ray, or Gilligan Ba Ray.
My sister thought it was gwee on ba ray.
I say it like you , Donna…..Ghee On Ba Ray That’s how Nates old Neuro said it, so I do too.

I had never even heard of Guillain Barre until it affected me. I think more people need to know about this horrible syndrome. It’s true however the more you look around/speak to people, the more it seems like 1-2 people sounds like too little of a number.