“But you don’t look sick” are
words uttered by friends and family members who learn that a loved one has been
diagnosed with lupus. But in fact, lupus is a physically challenging and life-threatening
disease, and until lately, lupus patients suffer in silence due to the lack
of the lack of awareness of the disease,
the lack of knowledge of the disease, and the lack of funds for research and
development for more FDA approved medications. Often misdiagnosed,
it can take as long as 3 to 4 years before an individual can be diagnosed
correctly. The lack of awareness of the disease, and not knowing the symptoms can
significantly hinder an individual from being diagnosed in a timely manner.
So what is lupus and how can we raise awareness about this disease? I sat down with Maria Myler, Georgia Chapter
President and CEO to get a better understanding of lupus and the current mission
and goals for the Georgia Chapter of the Lupus Foundation.
Phaedra: I’ve had family members who suffer with lupus and some have died from
it, but I never understood the disease…What is Lupus?
Maria: “Lupus
is an autoimmune disease that can attack any part of the body. It is where the immune system is unable to
determine between the good and the bad within the immune system. With lupus, the body cannot tell the
difference between the foreign invaders such as bacteria and viruses and the
healthy tissue within a person’s body and creates auto antibodies that attack
and destroy the healthy tissue. It affects mostly young minority women ages
18-45. Men and children of all ages are affected
as well”.
Phaedra: Many people think that the swelling of joints and skin rashes are the
only side effects of lupus…what are there other types of lupus?
Maria: There are 2 types of
lupus. Cutaneous Lupus Erythematosus
which is lupus of the skin which causes rashes or sores (lesions), most
of which will appear on sun-exposed areas such as the face, ears, neck, arms
and legs. Individuals with this type of
lupus find that their disease worsens with exposure to ultraviolet (UV) rays from
sunlight or artificial light. The more chronic type of lupus is called Systemic Lupus Erythematosus or (SLE)
and this where within the immune system, the body attacks itself affecting
vital organs of the body such as the skin lungs, nervous system, heart, lungs
and the kidneys. More than 50% of
lupus patients have kidney involvement, which results in dialysis and or kidney
transplants. With both types of lupus, patients experience extreme fatigue hair
loss and fevers.
Phaedra: What do
you find most challenging for individuals who have lupus?
Maria: I
feel that most lupus patients have the feeling that they are alone in this
fight. Also the unpredictability of the disease, the life diminishing and life
threatening effects of the disease, patients face physical and emotional
challenges every day. With lupus, every
day is different, every patient is different, and each reaction to the
medications is different.
Phaedra: For the individuals in the
work-force, how does lupus affect them on a day-to-day basis?
Maria: For the patients who are able
to sustain employment in the work-force, their symptoms can be managed through
medication, but they continue to face the physical and emotional constraints of
having the disease. They struggle with extreme fatigue, and fevers, changes in
their appearance due to hair loss, and swelling of the joints makes it
difficult to face the work day. For
those suffering with organ involvement, permanent disability is their only
option.
Phaedra: What are the medications being
prescribed for lupus patients?
Maria: There are only 2 FDA approved
medications for lupus patients, so raising awareness and funding for more
research is vital in this fight.
Currently there are 16 drugs in the pharmaceutical pipeline awaiting
approval and the next 5 to 10 years will bring about significant changes for
all patients with lupus.
Phaedra: How does the organization raise
awareness for lupus?
Maria: Our main fundraiser for the
organization is the “Walk to End Lupus
Now” campaign in which the state Georgia holds the largest attendance
record. By participating in the walk
patients have the opportunity to tell their stories which in turn reaches
donors who help in the fight financially.
Support groups, symposiums and the support of state lobbyists are also
tools used to raise awareness and funds for the organization as well.
Phaedra: What are the 2014 Goals for the
Georgia Chapter?
Maria: We want to build the corporate teams and get support from our
corporations here in Georgia. There are
some major corporations like Georgia Power and AT&T who have set up
headquarters in the state and having them participate as champions to this
cause would greatly increase awareness of lupus and produce major financing for
research and developments of safe FDA approved drugs for lupus patients.
Lack of awareness and support can
be just as detrimental as the disease itself.
Advocates of lupus, lupus patients and their friends and families are
working diligently to change all of that but, they need your help. For more information on The Lupus Foundation
or to contact your local chapter, please visit www.lupus.org.
Peace and blessings,
Phaedra
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