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Our website was initiated by a group
of epidermoid brain tumor patients with a combined goal to share
information about this type of tumor and to offer support for
people who have encountered its effects. Since the epidermoid
brain tumor is rare, we feel that it is not given the attention
for research or the publication of literature that the more common
brain tumors receive. There is little, if any information
concerning this brain tumor. Few studies are on record for long
term follow up and there is still little understanding of the
prolonged effects of this type brain tumor.
With the intent of providing support,
gathering data,
tracking that data, and sharing the information, this website has
been established.
In our online
discussion group, we have a range of experience from those
newly diagnosed to those who have
experienced several craniotomies. We are multi-national in makeup,
with members in more than 15 countries. Our combined years
of knowledge has become a source of
information to our members. We extend an invitation
to medical professionals who wish to gain a more personal understanding
of the epidermoid or would like to share new
findings in this area about our long term effects. We advocate for research
of
the epidermoid brain tumor in the hope that
we can prevent recurrence. With biological cellular research is the hope that the skin that makes up the
epidermoid brain tumor may have a slightly different cellular or
genetic make up that could possibly be
used as a base for a "designer drug" to
prevent recurrence or destroy the tumor
without affecting other structures of the brain.
Gene research for control of a factor to
prevent growth is also advocated along with research in nerve cell transplantation to repair
the nerve damage acquired by some patients from the long term effects of this brain tumor.
We hope you will find our website to be a
source of information and understanding.
Even though we all have family members, friends,
and caregivers in our lives, our online support group is a source of comfort to find others who are going though the same journey.
Whether you were recently diagnosed with
a brain tumor or are a long-term survivor, family member or
friend, we welcome you to join
us.
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