It's true that there aren't good epidemiological studies for many of the
rarer subtypes of muscular dystrophy. Dr. Jerry Mendell at Ohio State
University probably has the best statistics for the limb-girdle muscular
dystrophies and has probably uncovered cases of dysferlin deficiency
incidentally in the process (I will ask him and report back to the list).

Also, the CDC recently got 2 million dollars from congress to take a closer
look at the incidence of Duchenne muscular dystrophy and "other childhood
dystrophies." I might discuss with them the problem of the rarer
dystrophies to see if they could sort of roll those studies into the
childhood dystrophies studies.

I can understand how people might think that MDA would keep such statistics
since we note the diagnosis when people register with us, but this
information isn't collected scientifically or consistently. There are some
doctors who lump everything into limb-girdle and others who are careful to
distinguish between dysferlin deficiency vs. calpain deficiency vs.
heriditary inclusion body myositis, for instance ("lumpers" and
"splitters"). It's likely that most people with dysferlin deficiency
haven't gotten a diagnosis beyond "it's probably muscular dystrophy and one
that affects distal muscles." We can encourage, but not force, consensus on
this issue.

Anyway, at the very least, I will consult Dr. Mendell to see if he has a
feeling for the number of U.S. cases. Otherwise (and maybe still) the study
that Brad cites probably is the best extrapolation we can make right now.

Best Wishes,
Sharon

Sharon E. Hesterlee, Ph.D.
Director of Research Development
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, Arizona 85718

shesterlee@...
Phone: 520- 529-5433
Fax: 520- 529-5454


----- Original Message -----
From: jerrywilliams2 <jerrywilliams2@...>
To: <dysferlin@yahoogroups.com>
Sent: Friday, March 15, 2002 11:39 AM
Subject: [dysferlin] Re: stats


> Would it be appropriate to question the Neurological Society, or whatever
> it's called? Or, maybe better - to submit a questionaire for sending to
> their members - it might wake some of their members up to the specific
> disease and its characteristics. You and your chat members do, after all,
> represent a sizeable portion of the patients, if your estimated numbers
are
> even close.
>
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