Lupus Awareness: What You Don’t Know About Lupus

“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