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Click on the Subject (in
Blue) to Link to these Items:
Survey Forms:
Please use the linked survey form page to provide
research information. One form for symptoms
description has an embedded link to e-mail to Drs.
Kimonis and Weihl. Another form for Quality of
Life has an embedded link to Dr. Kimonis. Either
form 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 specific
mutation. Educational materials for patients,
clinicians, and geneticists can be found at Dr. Virginia
Kimonis web site at UCI.
Links: To
various organizations that provide resources and
information for help with a variety of issues, e.g.,
aging, prescription drug abuse, chronic pain, addiction,
home modification. 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.
Also, where you can participate by using spare computer
time for research.
Approved Treatments:
There are approved treatments for Paget's Disease of the
bone, although none yet for the myopathy and dementia.
There are treatments for a number of the secondary
effects from IBMPFD, including blood pressure, heart
disease, swelling.
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, especially in a solar heated
Water Therapy Pool, 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. Dr. Benatar's familial-ALS research
newsletter is available at
www.als-research.org. Note, familial-ALS is
sometimes associated with mutations in the VCP gene.
Genetic Testing:
Links to a source for genetic testing for mutations in
the VCP. CETT through UCI provides more
information about symptoms and how to obtain DNA testing
for the various mutation locations.
IBMPFD - Patients, Family, and Friends A private
Facebook group set up by Sarah Brumhard for a social
media presence. You must log in to Facebook to use.
For comments, suggestions, or questions, please e-mail
david@ibmpfd.info. |
