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Old 09-25-2012, 08:02 AM #1
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alice md alice md is offline
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Join Date: Sep 2009
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Default How rare is MG?

I thought we should be looking at this question seriously, as the rarity of MG constantly serves as an excuse for lack of research and the relatively limited knowledge and treatment options for this illness, (which for some patients can be very debilitating and even life threatening and many that do respond to treatment suffer from significant side-effects).

No doubt that it is a rare disease, but how rare is it compared to other diseases in which there is much more research?

And is this the major reason why the treatment for this disease has essentially remained the same for the last 30 years?

multiple myeloma has an incidence of 5/100,000 and the average age of the patients is more than 60. There are 1500 studies listed world-wide. (as compared to 30 in myasthenia).

myelodysplastic syndrome has an incidence of 3/100,000 and the average age is over 60. There are 1200 studies listed.

Chronic Lymphocytic Leukemia has an incidence of 5/100,000 and the average age is over 60. There are 1200 studies listed.

Chronic Myeloid leukemia has a similar incidence and there are 1200 studies listed.

Immune thrombocytopenia has an incidence of 10/100,000, there are 200 studies listed.

Thrombotic thrombocytopenic purpura has an incidence of 1/100,000 and there are 140 studies listed.

So, I don't think that there is such a simple explanation for why there is so little research done in this illness.
Maybe if we are able to figure out the true reasons we will also be able to do something about it.
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