Hi Everyone, I was interested to read that the occurence of EM is more prevalent in Norway than anywhere else.im wondering why this is the case. Of note despite working for many doctors in NZ none of them have EVER heard of it. I have 3 sisters in Norway and all of them know someone with it. Does anyone know any reason for this ?
Most doctors have never even heard of EM and they certainly don't know what causes it (except for the Gene mutation), so I am sure nobody has a clue why it is prevalent in Norway. And I am not sure that what you read is correct. Could you provide us with the article or the source? I mean , who wrote that? I would love to contact them to find out where/how they came to that conclusion.
Just speculating here -- in addition to genes could it be enviromental, e.g. something to do with sun exposure or amount of daylight? I lived in Wisconsin for 20 years, though have been in Calif the past 4 years. Did not get much sun exposure during the winter months, had an office job and worked long hours so may have been deficient in vit D. Norway would be similar. What was your environment like in NZ?
My current nerve issues are a result of a long term B12 deficiency that I believe began years ago but was only diagnosed last Nov.
Certainly genetics could make it more common in one area of the world. The Vit D connection is also compelling... I have read that vitamin D deficiency is correlated with the onset of autoimmune disorders.
But it could also just be that Norway has a health care system more likely to identify it. (For example, celiac disease is diagnosed much more frequently in Europe than in the U.S. The incidence rate is about the same, but diagnosis and awareness is much higher in other countries.)
Hello,
My bet is that the actual prevalence in Norway vs. U.S. is not very different, but it's just my guess. The actual published incidence of EM is Norway is .25/100,000 (vs. 1.3/100,000 in the U.S.), according to this paper (fr. Mark Davis, MD et al at Mayo Clinic):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771547/
Regardless of the country, due to the rarity of the condition combined with the relative lack of knowledge about it (i.e., very few MD's have ever seen it (or have even heard of it), much less diagnosed patients), I bet it's underdiagnosed virtually everywhere (i.e., most countries).
Hi,
Living in Sweden where nobody knows of EM I can tell that in Norway they are more informed and interested .
In Sweden noboby knows of EM but in Norway there is more interest and even a web page from Oslo about EM.
I Think the difference is not prevalance but knowledge...
The genetic diffrence between Norwegians and Swedes should be very small..
We are almost the same peopele...as long as it not comes to soccer, icehockey, cross-country or downhill......
Skaal
Goran
I think I may have misread the data and got confused with the difference between "incidence" and "prevalance". Thanks for all the interesting comments. And I think you are right in that Norway are possibly more informed on the matter. When I was trying to find the article I had read several months ago, I did read that in China there was a sudden epidemic of EM that affected hundreds to thousands of people. I think it said 1980's. I was interested to read about Vitamin D. Despite having plenty of sun in NZ, as we have the highest rate of malignant melanoma in the world, many people keep well out of the sun and Vitamin D deficiencies are becoming much more common.
James said:
Hello,
My bet is that the actual prevalence in Norway vs. U.S. is not very different, but it's just my guess. The actual published incidence of EM is Norway is .25/100,000 (vs. 1.3/100,000 in the U.S.), according to this paper (fr. Mark Davis, MD et al at Mayo Clinic):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771547/
Regardless of the country, due to the rarity of the condition combined with the relative lack of knowledge about it (i.e., very few MD's have ever seen it (or have even heard of it), much less diagnosed patients), I bet it's underdiagnosed virtually everywhere (i.e., most countries).
music88 said: Hi, James, your comments reminds me of my diagnosis of Interstitial Cystitis in 1991 -- thought to be a mysterious, debilitating bladder disease for which there was no cure, no one including docs could understand it, or even pronounce it. I spent years searching, lost my career, went on disability finally, and eventually got better! But at the time they thought 500,000 people (mostly women) had the disease in the U.S. alone. With research and much needed advertising in magazines, articles, etc. etc. IC came out of the closet. Now it is even over-diagnosed! I suspect it will be the same for EM in America. It takes much time for the word to get out to everyone, MD's included...but it WILL HAPPEN. Sadly, the research is going on at Yale, 3 miles from my home, and yet...not much that can help me right now. So, I do what I did in the 1990's with my FIRST rare disease, which is pray, seek out answers and network as much as I can; only thing is: I am 20+ yrs. older and everything is harder to do. I appreciate everyone's ideas and input. Best wishes, all.
Music88 up here in Connecticut.
James said:
Hello,
My bet is that the actual prevalence in Norway vs. U.S. is not very different, but it's just my guess. The actual published incidence of EM is Norway is .25/100,000 (vs. 1.3/100,000 in the U.S.), according to this paper (fr. Mark Davis, MD et al at Mayo Clinic):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771547/
Regardless of the country, due to the rarity of the condition combined with the relative lack of knowledge about it (i.e., very few MD's have ever seen it (or have even heard of it), much less diagnosed patients), I bet it's underdiagnosed virtually everywhere (i.e., most countries).
I was told it is high in Noway too. Something to do with genes. My ancestors were of Scandinavian decent but apparently my em is secondary to Peripheral neuropathy due to spinal issues.