Editorial: What do you know about lupus?

Yesterday, the world paused for the 15th observance of World Lupus Day.   Our plans were to highlight this very important day, but life got in the way.  And for people living with lupus, life gets in the way a lot.  Unfortunately, lupus is a condition that resides in the background of public consciousness and rarely gets the attention it deserves; neither from a public education nor a financial support perspective.  It is for these reasons that we have chosen to use our voice to lend a small bit of assistance towards ensuring that people who are afflicted with lupus are diagnosed and treated effectively. 
Effective diagnosis and treatment is the goal of the World Lupus Federation and healthcare professionals everywhere.  Millions of people around the world are affected by lupus, yet relatively few people know about the condition – but you should, because there is no group that is immune.  Lupus affects people of all nationalities, races, ethnicities, genders and ages. As well, according to worldlupusday.org, “Lupus can affect any part of the body, in any way, at any time, often with unpredictable and life-changing results.”  The key to helping control its impact is knowing all you can about lupus.  Educate yourself!
Here at home, Dr. Ian Thomas, a local kidney specialist, is urging relatives and friends to support their loved ones diagnosed with lupus.. In an interview with OBSERVER media, Thomas said that women of African descent and women of reproductive age 13-55 are most affected by the disease that has no known cure.
He said, “There are a variety of factors that can lead to the development, the main one being genetic. There is a hormonal influence which is why we see it in women of the reproductive age range; it may have an influence on its development.  There is also the environmental factor which is possibly related to exposure to virus illnesses.”   These statements are not meant to frighten anyone. No, the purpose is quite the opposite.  They are meant to educate.
To understand why we are emphasising this disease, it is helpful to know a bit about lupus.  Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.  The manifestation can range from joint pain, muscle aches or photosensitive rashes, ulcers, hair damage, hair loss, fatigue, low blood count, low platelet count, to the very common and devastating, kidney damage and failure.   The immune system attack can be so severe it can lead to death.  By the way, although women are more susceptible to the disease, men are not immune.
We probably have your attention at this point.
It is not all bad news though, for while there is no known cure, Dr. Thomas said that advancement in research has led to more people affected by the disease, living longer.  He stated, “Ninety percent of patients will live for at least 10 years with lupus.”  As we stated before, that life can be difficult, and it is important that we establish good support systems for those who are afflicted.  
According to the good doctor, “It is common to focus on cancer, stroke, heart attack and kidney problems, and yes those are important, but this disorder often affects the quality of our young women when they should be optimally contributing to our society. The fatigue that persons may experience, with skin problems and the muscular system, it often takes a toll, and we have to remember the mental health aspect of it.”  And, “Because it is a disorder that affects the immune system, the medication usually dampens the system which opens the patients to developing infections and certain types of tumours, and the medication can have other unwanted side effects,”
This may seem like an odd topic to editorialise but that does not make it unworthy.  In our opinion, lupus has a significant enough impact on the lives of our sisters and brothers  with the condition that we should all exercise generous amounts of empathy to those we know, as well as those people we happen to meet, who are battling the dreaded disease.
In the Lupus Knows No Boundaries e-report, co-Chairpersons of the World Lupus Federation, Sandra Raymond, President and CEO of Lupus Foundation of America, and Kirsten Lerstrøm, Chair of Lupus Europe, jointly make the point that “Lupus is difficult to diagnose, hard to live with and a challenge to treat.”  They add that the “Lack of understanding in society means health concerns expressed by people with lupus are often greeted with skepticism by family and friends” and “to address the many misperceptions about lupus, we need to talk about it.”  That is what we hope to accomplish with this piece –  a dialogue about lupus and an understanding of the disease.  If we are successful in taking those two small steps, we are closer to a better future.