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How 'special' are we ?

Anyone have any idea of what % population have MC ?
Are we 1 in a 1000 or is it greater/less.

Thanks in advance....

Kev

Re: How 'special' are we ?

Kev,

I don't think there's really a definitive answer. The incidence will tend to be higher in areas where the gene pool is less "diluted" which is true of any inherited condition.

Several websites list the incidence of MC (both types) in Scandinavian countries to be 1 in 10,000. I think it's considerably less in most countries. A book titled "Syndromes" lists the incidence of Becker's MC at 1 in 50,000 worldwide and they claim it's more common than Thomsen's.

I did my own informal estimate many years ago based on some input from local MDA clinics and estimated the incidence in the Western US to be about 1 in 16,000.

Until there's a pharmaceutical application for our condition I doubt we will see many attempts at an accurate number. That seems to be a driving force for epidemiology studies :-)

Jan

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Re: How 'special' are we ?

Hi - In the research I have done, the numbers I have found indicate the world-wide general incidence to be about 1:100,000, while in Scandinavia, especially Sweden, it is 1:10,000.

Since the Becker's type is a much more difficult type to get under ordinary circumstances, because you need 2 parents with the recessive gene, and then the chances of getting it are 1 in 4, 1 in 3, or 50/50, depending on whether the parents are carriers or affected, it would not make sense for it to be the more common type unless the groups where it is more prevalent, like Sweden, have Becker's, and the gene pool is quite limited. In that circumstance, it could really be a common defect!

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Re: How 'special' are we ?

In my expert opinion i think we are all very special..

Type of Myotonia: MSN Messenger

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Re: How 'special' are we ?

I have a feeling there are people that are getting misdiagnosed. When I told my family doctor I was ready to be tested, he sent me to a neurologist. What an experience! I had to practically beg to get tested. I was told I was wasting the doctors time, and wasting my insurances money- I did not have the look of someone with MC. I was told I should have my doctor test for arthritis- even after I told him of a family history. I bet this happens a lot, so it would really be hard to get an accurate number.