Slightly Unhinged

Today is World Lupus Day and although it sounds goofy (How exactly do you celebrate World Lupus Day?  I vote for having cake and exchanging gifts!), it really is a great opportunity to bring awareness to a disease that is often unrecognized or misunderstood, despite the fact that it affects millions of people all over the world.

If you don’t know much about lupus, here is some basic information about the disease from the Lupus Foundation of America:

Every day, more than 5 million people worldwide struggle with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys, and brain.

Nine out of ten people with lupus are women. Eighty percent of new lupus cases are diagnosed among women ages 15 to 44, striking at the peak of their reproductive and career potential. A merciless predator, lupus permanently disables many young women.

In an autoimmune disorder like lupus, the immune system is not able to tell the difference between foreign substances (called antigens) and its own cells and tissues. The immune system then makes antibodies directed against “self.” These antibodies — called “auto-antibodies” (auto means ‘self’) –- attack the body’s own cells and cause inflammation, pain, and damage in various parts of the body.

Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means “set on fire,” is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both). Uncontrolled inflammation can permanently damage vital organs.

In its most severe form, lupus can cause disfiguring rashes and scarring, multiple miscarriages, kidney, heart and lung failure, impaired neurological function, strokes, heart attacks and death.

Lupus also complicates and limits the treatment of cancer and other life-threatening diseases.

Many people with lupus are unable to maintain employment or attend school because of extended lupus-related absences and hospitalizations. A majority of those affected must live with debilitating pain and profound fatigue which greatly affects their quality of life.

For some, memory and mental processing may be impaired, rendering simple tasks, such as recalling names or balancing a checkbook, as significant challenges. There is always the ever-present threat of a flare — the sudden onset of more serious symptoms.

Despite its enormous public health implications, lupus remains a dangerously under-recognized and under-appreciated women’s health issue.

I care about lupus not only because I care about women’s health issues in general but also because I was diagnosed with the disease in 2004.  My health problems began when I was 28 and I was fortunate enough to be diagnosed just one year later, which is actually relatively fast considering that the symptoms of lupus are similar to those of many other illnesses, making diagnosis difficult.  Lupus has had a dramatic effect on my life:  I had to give up a challenging and rewarding career because I could no longer keep up with the demands of the job I loved,  I never know from day to day if I am going to have enough energy or feel well enough to go about my normal daily activities, I’ve suffered through serious side-effects from some of the medications used to keep my illness under control, and I’ve dealt with depression brought on by the daily struggle of living with a chronic and debilitating illness.

Lupus has had a huge impact on my family as well.  Besides the problems caused by the significant loss of income when I had to switch from full to part time employment (my full-time salary had been higher than my husband’s), my illness has also placed additional burdens on my husband and son since they often have to pick up the slack and take care of things I usually do when I’m too ill to do them.  Most troubling to me, my son (who was 8 when I first became ill and is 13 now) has spent way too much time in doctor’s offices and hospital waiting rooms, worrying about my health and taking on more responsibilities (both real and imagined) than he should.  He’s a wonderful kid that I couldn’t be more proud of and I think growing up with a chronically ill mother has made him extraordinarily caring and compassionate but it’s also made him grow up faster than he needed to – this is probably the thing that bothers me most of all and makes me feel the guiltiest.

Just like all other people with lupus all over the world, I’ve done the best I can to be positive and lead as full and productive a life as possible despite my illness.  It is a definite challenge and some days are better than others but ultimately, I’m not willing to give up.  What choice do I have?  My life is too important and too valuable to surrender to this disease.

I urge everyone to honor World Lupus Day by learning about lupus and doing what they can to advocate for more research funding and development of new medications and treatments for this devastating disease.  At the Lupus Foundation of America site, you can sign up to be an e-Advocate and help get action on legislation important to people with lupus without even leaving your home or office.  Your support really does make a difference.