The Lupus Support Network
P.O. Box 17841
Pensacola Fl  32522-7841
800.458.8211
850.478.8107
www.thelupussupportnetwork.org
questions@thelupussupportnetwork.org
What's
Happening
Now !
Benlysta™ trial results in an
historic research
breakthrough and victory
for people with lupus

Second successful phase III
trial points to the first new
lupus treatment in over 50
years

Today at 5:47am
Second successful phase III
trial points to the first new
lupus treatment in over 50
years

New York, NY (November
2, 2009) -- The Lupus
Research Institute (LRI)
and its National Coalition of
state and local lupus
organizations congratulate
Human Genome Sciences
(HGS) and
GlaxoSmithKline for
achieving an historical
landmark - the second
positive phase 3 clinical
trial of Benlysta
(belimumab), the first
successfully tested new
drug developed specifically
for people with systemic
lupus.

The trial was the second
double-blind, placebo-
controlled, multi-center
study of Benlysta. Known
as BLISS-76, the trial
enrolled and randomized
826 patients at 133 clinical
sites in 19 countries,
primarily in North America
and Europe.

Weekly Blog
Informative, Fun and
Hopefully Useful
There I Grow Again


Don't Worry if you have problems.
Which is easy to say until you are in
the midst of a really big one, I know.
But the only people I am aware of who
don't have troubles are gathered in
little neighborhoods.

Most communities have at least one.
We call them cemeteries.
If you're breathing, you have
difficulties.

It's the way of life. And believe it or not,
most of your problems may actually be
good for you.

Let me explain.

Maybe you have seen the Great
Barrier Reef, stretching some 1,800
miles from New Guinea to Australia.
Tour guides regularly take visitors to
view the reef.

On one tour, the guide was asked an
interesting question.
"I notice that the lagoon side of the
reef looks pale and lifeless, while the
ocean side is vibrant and colorful," a
traveler observed. "Why is this?"
The guide gave an interesting answer:
"The coral around the lagoon side is in
still water, with no challenge for its
survival. It dies early.”
The coral on the ocean side is
constantly being tested by wind,
waves, storms - surges of power.
It has to fight for survival every day of
its life. As it is challenged and tested it
changes and adapts.
It grows healthy. It grows strong. And it
reproduces."
Then he added this telling note:
"That's the way it is with every living
organism."
That is how it is with people.
Challenged and tested, we come alive.
Like coral pounded by the sea, we
grow.
Physical demands can cause us to
grow stronger.
Mental and emotional stress can
produce tough-mindedness and
resiliency.
Spiritual testing can produce strength
of character and faithfulness.

So, you have problems - no problem.
Just tell yourself, "There I grow again."

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.
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.
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.
Physicians For
Patients
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:
"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."
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
Fleishman Road
10:00 a.m.


Pensacola
4th Saturday of each month
Cokesbury United Methodist
Church
9th Ave.
11:00 a.m.