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The Lupus Alliance of America has
developed a lupus survey that we are
hoping you will share with your
membership. We all know that lupus has
come under special focus at the National
Office of Women’s Health and the Office
of Minority Health. National awareness
campaigns are underway and more
research on lupus is taking place than
ever before.
This is a very important time for lupus
research and the Lupus Alliance of
America would like to hear from those
who have been diagnosed with lupus and
learn more precisely how lupus has
impacted their life.
By participating in the survey, those
diagnosed with lupus will help us to:
1. Understand individuals living with
lupus.
2. Create better education and support
forums for patients, their families and
communities.
3. Provide data that will help all of us
obtain local and state resources for
patient education, awareness and
advocacy programs.
The survey is composed of 38 questions
and will take less than 30 minutes to
complete. All completed surveys will be
analyzed with the assistance of faculty
members at Long Island University, C.W.
Post Campus, who will be donating their
time and expertise. Further information
and instructions can be found in the
informed consent form attached to the
online survey.
Findings from this survey will be made
available via the Lupus Alliance of
America website, www.lupusalliance.org,
newsletters, public service
announcements and sponsoring
research institutions. Should any
questions or concerns arise, please call
the Lupus Alliance of America at (866)
415-8787 or
We thank you in advance for letting us
count on you and Count You In to help
us reach out to as many lupus patients
as possible by including the survey link
on your websites, in an e-mail blast
and/or in your newsletter. Your help will
be much appreciated and we will
ultimately all benefit from the information
we receive from the results of the survey.
A Survey link can be found at:
or by clicking on the link below(this can
be copied for use within e-mails or as a
link on your website).
Diagnosed with Lupus? Take the Lupus
Alliance of America Lupus Survey
We thank you in advance for your help.
JoAnn Quinn, LRI Board of Directors,
Treasurer of the LAA
Honi A. Kurzeja, President, Lupus
Alliance of America
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The Lupus Support Network
will be hosting our first
5k/3k run/walk on
April 24, 2010 on Pensacola
Beach.
Come join us for the fun and help support
the programs of The Lupus Support
Network.
All funds raised during this event are used
locally to help those affected by lupus.
The Lupus Support Network is a 501c3
Charitable Organization.
Click on this link for the registration form:
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May is
Lupus
Awareness
Month
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Lupus Awareness Month
by wearing an orange ribbon.
Ribbons can be obtained from
The Lupus Support Network.
800.458.8211
850.478.8107
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Once again it has become very apparent how important it is for
EVERY patient to keep copies of their own medical records.
You never know when a flare will hit, when you will be sent to a
speciality center for additional evaluation and / or treatment, or
when new physicians will join your health care team and will
need access to your previous test results and treatment.
In 2002, in the midst of a bad flare and after I had already been
shuffled to 5 or 6 different physicians, I wrote My Personal
Health Journal.
A friend of mine told me that it could be very valuable for other
patients, so it has been made available for purchase through
The Lupus Support Network. All profits from the sale of this
journal benefit the programs of The Lupus Support Network.
My Personal Health Journal has a place to list all your
pertinent health information including surgeries, vaccinations,
physicians with phone numbers, current medications, current
allergies as well as many pages on which to record information
from each visit to one of your physicians. There is also a chart
where you can record lab test results as well as additional
information.
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My Personal Health Journal can be ordered from The
Lupus Support Network for $15.00 plus shipping.
Send and e-mail or call the office and order yours
today.
You never know when you may need your medical records
and having them handy will keep you from running all over
trying to gather papers that may not exist. Your medical
information can be invaluable to you and your health.
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Don't forget about the new website for
Lupus patients hosted by physicians:
PhysicansForPatients
Join the site. The Lupus Support Network will
begin hosting on-line support via this website in
the near future. If you have a topic you would
like covered in an on-line support group send an
e-mail to us and we will consider it for future
on-line group meeting topics.
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Physicians For
Patients
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Desiderata (latin for “desired things”) is an
inspirational prose poem written by Max
Ehrmann in 1927 about attaining happiness
in life. It goes something like this:
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"This is a pivotal moment in lupus
research," said Margaret G. Dowd,
president of the LRI, an
organization that pioneers
discovery in lupus. "It
demonstrates the power of
innovative science to drive
discovery and achieve solid
clinical results in the complex
autoimmune disease of lupus.
Benlysta represents new hope for
the 1.5 million Americans with
lupus and millions more
worldwide who have suffered
without a safe and effective
treatment for more than 50 years."
"This is spectacular news for the
world-wide lupus community,"
said Tammy O. Utset, MD, MPH, an
associate professor of medicine at
the University of Chicago. "These
trials demonstrate that SLE can be
studied successfully in a clinical
trial setting and should encourage
further interest in drug
development for lupus, an area of
great unmet need. Further, these
two large, well-designed trials will
allow Benlysta, the first biological
agent for the treatment of SLE, to
be submitted to the FDA for
potential approval."
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Check out your local
support group:
Panama City
Discontinued until further notice
Brewton AL
2nd Wednesday of each month
D.W. McMillan Hospital
11:30 a.m.
Crestview
Discontinued until further notice
Mobile Alabama
3rd Thursday of each month
USA Children's & Women's
Hospital - 3rd floor conference
room
noon
Ft. Walton Beach
Discontinued until further notice
Tallahassee
3rd Saturday of each month
Broadview Assisted Living Facility
Fleischman Road
10:00 a.m.
Pensacola
4th Saturday of each month
Lupus Office
Airport Blvd.
11:00 a.m.
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