Hi,

I am looking for some one to host a Mailing List for our support group.
Our support group "MYOSITIS", is for people who are inflected with one of
the three Myositis diseases, Dermatomyositis (DM), Poloymyositis (PM),
Inclusion Body Myositis (IBM).

The myositis diseases are a very rare group of diseases inflecting a small
number of the population, estimated to be 500-800 people world wide.  The
disease is little known to the public or the medical industry itself.  This
is an auto-immune disease which is not understood as to the cause or origin
of the disease.  Diagnosis is usually difficult and misdiagnoses is not
uncommon resulting in the correct diagnoses not being made for months and in
some cases years. Treatment is not well established and there is little
information for the doctor to use when the disease has been diagnosed, many
time it is trial and error because patients react differently to the disease
and to treatment.  The rate of these diseases going into normal remission is
very small, for most of us it is a life time disease.  As these are immune
diseases many complications arise on an on going basis, other illnesses,
weakness, etc.  In addition many problems arise from the strong medications
used in an attempt to control Myositis (diabetes. osterphorosis, liver
damage,lung damage, hyper tension, high blood pressure. etc.)

Myositis effects the involuntary muscles of the neck, shoulders, back, upper
arms, upper legs in all but the least sever cases. In advance cases they
will effect the other involuntary muscles and in extreme cases they have
effected the voluntary muscles (heart, lungs, etc.).  The diseases are
accompanied with extreme muscle inflammation and muscle pain, resulting in
extreme discomfort which in its self may need to be treated with pain
killers.

Many people have had the disease for years and until the Internet have never
known another person with this disease.  The Internet has created a
tremendous resource for us.  Along with the other resources one of our
members has created a web home page which has been a tremendous resource for
us.

http://spot.colorado.edu/~farnham/s.html
This is Sharon Farnham's home page and provides a tremendous resource for
us.

These diseases are often accompanied with mild to sever depression,  this is
where we feel a list-server, mail list would be a great service to our
members in addition to the other benefits.

I would like to supplement her resource with a "MYOSITIS Mailing List" that
would allow greater communications and exchange of experiences with
treatment and to support for each other.  I would love to be able to
announce such a service in my next news letter.  I have a little less then
300 email addresses on my mailing list, this list represents patients from
both within the US and about 25 other countries

Can any one help us out by provide a list service? It would be greatly
appreciated.

I will gladly supply additional detail information if desired. I can be
contacted at any of the following:

John Hawk Washburn
1202 Winners Cup Circle
St... Charles, IL 60174

(630) 443-7244  (Voice)
(630) 443-7242  (FAX/DATA

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