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Message Board: Use this link to read or post
messages for exchanging information. You must log in to
post messages. Click
on the Subject to Link to these Items:
Survey
Form: Please use the linked survey form to
provide research information. The form has an
embedded link to e-mail to Drs. Kimonis and Weihl or may
be printed and mailed.
Research Projects:
Active research projects needing participants.
References:
Embedded articles and links to sites to provide
information about DNA in general and this disease
specifically.
Links To the MDA and other research institutions that have information
that may help, as well as some specifics on Paget's
Disease of the Bone.
Approved Treatments:
There are approved treatments for Paget's Disease of the
bone, although none yet for the myopathy and dementia.
For Caregivers:
Information to assist caregivers handling the needs of
affected persons as well as support for caregiver
issues.
Nutrition:
A list of substances that have helped me may help others. Dose and
frequency will vary by individual, so one should consult
a variety of sources and check one's own progress when
taking.
Exercise: Some ideas about what kinds of
exercise may help. Regular stretching is very important,
not just for the muscles, but also tendons and
ligaments.
Equipment: Some ideas on types of equipment
that may help and links to sources of the equipment. Tools
and aids make the
performance of tasks easier and allows one to continue
doing many of the things one either needs or likes to
do, with much less pain and effort.
Glossary: Some terms and definitions that are
pertinent to neuro-muscular diseases. This page is from MDA Quest
magazine. Also see
the
Full
Glossary (from NIH) for a complete list of gene
related terms and
definitions.
Newsletter: Electronic copies of the printed
newsletters provided by Dr. Kimonis.
Genetic Testing:
Links to a source for genetic testing for mutations in
the VCP. |
