CIDP Cases Statistics

Google.

Kelly

I just read something about that in another website. It stated only CIDP cases though and not GB. 1 in every 100,000 people are diagnosed with CIDP> But it also stated that there may be many not even diagnosed or misdiagnosed having something else until they reach a criteria. Can’t remember where I found that site though!

[QUOTE=GaryO Houston]Does anyone know where I might find the statistics on the number of CIDP cases are diagnosed in the US yearly?

Also is there anyway (besides asking directly) that I can find out how many cases a particular neurologist has treated?

Many thanks, Gary[/QUOTE]
I wish i knew the statistics as well,but seeing as most people don’t even know what we are talking about ,it is hard to gather any data.I just posted for the first time this week,although everyone has been soooo supportative I still feel i am at a loss for what I can expect in the future.Every case is different and i am very afraid for my future.

[url]www.rarediseases.org[/url]

rarediseases.info.nih.gov

and

Google

I was always told by all of my neuros that CIDP occurs in one person per 1,000 per year. That is why it seems more common than that; such as, I would be a dx statistic from the year 2002.
Pam

My husband had it for a couple of years before they diagnosed him. We think when they thought that he had a mini stroke it was the CIDP. His neurologist was the one that told us that because the cat scan did not show a stroke.

According to the ‘Guide to CIDP’ issued by the UK GBS/CIDP Support Group and online at [url]http://www.gbs.org.uk/info/cidp.htm[/url]

“CIDP is a rare disease of the peripheral nervous system which affects about 500 people in the UK at any one time.”

The official UK mid-2006 population was 60,587,000. That makes it 1 in every 121,000 affected by CIDP at any one time.:)

So with the US running about 304 million
that puts US cases at roughly 3040 cases
divide by 50 and average per state is 61

world pop is 6.7 billion thats what 67K cases

If it is 1 per 1,000 dx per year, there are more cases than that overall. My dermatologist said that he currently has 5 patients from the area with CIDP. Now I live in a rather rural area of northeastern MN with a population of 7,000 in the town my doctor is located. I think it is more prevalent than that.

The statistics given to Pam H are most unusual.
The incidence of GBS worldwide is 1.7 per 100,000 annually.
I am astonished to think that for CIDP it would be 100 per 100,000 annually about 60 times that of GBS!
The info in the UK handbook/online info has been vetted by the Medical Advisory Board. Its membership includes Prof Richard Hughes (London), who wrote the 1st edition of the handbook and Prof Hugh Widdison (Glasgow). Both are members of the GBS/CIDP Foundation medical advisory board too and are recognised worldwide as being experts in GBS and CIDP.;)

I know that we have discussed this with GBS over the past number of years. It may very well be a similar case with CIDP where many of the cases are not diagnosed correctly and so many people out there are dealing with CIDP but their docs consider it among the thousands of neuropathy disorders out there that haven’t as yet been named – Dr. Cornblath (Johns Hopkins) did say that this was very common.

[COLOR=black]For acute diseases, incidence is the more useful statistic. Incidence is the ratio of the population (usually in a region or country) diagnosed per year. GBS falls into that category. Dr. Asbury of University of Pennsylvania puts the incidence of GBS as a little over 1 per 100,000 in the US per year.[/COLOR]

[COLOR=black]For chronic diseases, prevalence is probably the more useful statistic. Prevalence is the ratio of the population (again, usually in a region or country) with the diagnosis on a particular day. There are studies in England and Australia that suggest that the prevalence of CIDP is a little over 1 per 100,000. There are estimates that CIDP might be as common as 7 per 100,000.[/COLOR]

[COLOR=black]Where either of the diseases is underdiagnosed is hard to say. Many of the symptoms overlap with other neuropathies. For example, about 15% of diabetics have some symptoms in common with CIDP, but that does not mean they have CIDP.[/COLOR]

[COLOR=black]MarkEns[/COLOR]

I believe thar current statistics are

1 to 2 per 100,000 for CIDP. I am not aware of the stats for GBS, I haven’t discussed it.

Remember also that neurologists will refer patients to those who have experience. No neuro’s around me will treat me, I have to go to a research university for appropriate treatment. So that neuro has 15 patients, or something like that, at any one time.

I am thinking MarkEns has the key to the number there

GBS-acute-1/100000 new cases per given year- so to me that means like there are probably more people lets say in the US who have or had GBS than cidp
although the 1/100000 for Cidp is at any one given time.
I am not sure if I have it right, it is beginning to make sense to me.

So far I have found 2 GBS’ers, one in my neighborhood by talking, the other
an employee of the company I work for. he is in Springfield IL.

I found no CIDP so far unless through the website.
Somehow my gut feel was that GBS occured more frequent. Many appear to recover. Are you still considered to have GBS if you 100% recover? Thought it was a once and done affliction and that if it happens again they call it CIDP. The CIDP patients always have the disease. Is this fairly accurate?

tim

Tim,

There is a bit of a conflict between a clinical definition and a practical one. From a clinical standpoint, once one has started to recover, especially when one has stabilized, you are “over” GBS. However, most people who have residuals consider that they are still affected by GBS, which in fact they are. Still, there is no active clinical process occurring.

It is possible to contract GBS a second time without it being considered CIDP. It depends on the course of the attack. If it is short (<4 weeks) and there is a good recovery, then it was a second GBS episode. If it is longer than 8 weeks, then CIDP is likely.

It is possible to recover from CIDP, but only very rarely without treatment and not very often even with treatment. The less severe the initial decline and the younger you are, the better your chances of a recovery. PamH and Liz (handle of codystanley) have put their CIDP into remission, but only after considerable treatment. Both have been left with considerable residual effects. It is probably best to consider it a life-long condition, sorry to say.

MarkEns

One thing to bear in mind with CIDP is that many specialists think that a number of the chronic undiagnosed neuropathies could be some form of CIDP, which would make the disorder rather more prevalent than the statistics indicate.

Deb
London

Have just been reading the Summer 2008 issue of ‘The Communicator’, the GBS/CIDP Foundation journal. Reprinted are excerpts from Prof Richard Hughes’ presidential lecture to the Peripheral Nerve Society meeting in Utah, July 2007.

About CIDP there is this sentence.
“The accumulation of evidence for the treatment of CIDP has been somewhat faster considering that its prevalence is only about 4 per 100,000 [Chio et al 2007].

I probably live within 100 mile radius of the area that PamH lives.. I know that this Northeastern Minnesota has one of the highest per capita neuropathies..; Or at least thats kinda of what people think.. There seems to be an awful lot of MS cases up here..
I’ve got a little mathematical tidbit for you guys.. There are probably only 150000-200000 people within 100 square miles of where I and PamH.. Yet I know 2-3 people within 10-15 miles of my house that had gbs… Overall, (including myself), I know of 3 cidp, and 4 gbs cases, (within this 100 miles) and many people with MS, and other neuropathies.. Tell me how this reconciles with the 1 per 100000 statistics the neuros throw at us….
I tend to really agree with MarkEns, in that these neurologists are rediagnosing as cidp, when in fact it is ongoing gbs issues, perhaps like me…
In addition to this number, I heard of at least 2 cases of gbs at the hospitals this year in Northern Minnesota, but I didn’t hear who they were…..
Interesting Information,,,,,,deanop

We’ve been dealing with neuropathies over 10 years but the local docs couldn’t name it. Finally referred to an excellent doc who did both deep muscle bioposy and spinal tap. Turns out she has both CIDP and polymiocitis, but it’s now apparent she didn’t get treatment in time.

My point is that doctors were not looking for either 10 years ago and in the last 3 or 4 years CIDP has become pretty well known and more people are being diagnosed. So it may be an awareness issue as well as population reference.

When my wife was dual diagnosed, CIDP was 1/100K and Poly 1/125K which together should make her about the only person in the universe with both (100K x 125K = a very big number). The doctor said he has had less than a dozen with both and he gets a lot of what he calls “interesting” cases.

Gosh that is a large number of people. I just wished there was some way they could bring the nerves back to life and we could all be normal again! It’s not fun having! Especially when the weather changes. That drives nuts when the weather changes.