Recently, I was part of a conversation about what it is like to live with lupus. One of the women commented, "We are all so different, like snowflakes." "Yes," another participant added, "Like snowflakes are all made of snow - we're all wrestling with the same thing - in different ways."
Both these comments resonated with me as I learned from and listened to this group of women describe their daily struggle with systemic lupus erythematosus (SLE), the most common form of lupus. For me, this dialogue illustrates one of the fundamental dualities about lupus. Like snowflakes, each lupus patient is unique. No two patients have the same experience with this debilitating, and sometimes life threatening, chronic autoimmune disorder. At the same time, there are commonalities among people living with lupus. Most lupus patients experience extreme fatigue, painful or swollen joints, sun or light sensitivity along with a long and varied list of other symptoms.
Lupus is sometimes a hidden disease - people living with lupus may not look sick - the battle going on inside them is invisible to others and the symptoms can mimic many other conditions. More than half of lupus patients experience symptoms for years before being diagnosed. Lupus waxes and wanes, but it is always there. There are periods of remission and periods of disease activity, or flares, which can be severely debilitating and can cause cumulative irreversible damage to the kidney, heart, lungs or nervous system. Some people with lupus experience mild symptoms for years, others can develop immediate and life-threatening symptoms almost immediately. One person's experience may not describe or predict another's experience at all.
Patients voice the concern that lupus is not well understood; that they themselves are not well understood. Many people with lupus report that family and friends expect more of them than they can reasonably accomplish. With little progress made in treating or curing the disease patients are understandably frustrated. Physicians also express frustration that lupus is a hard disease to get ahead of - they feel reactive rather than proactive in helping patients manage their symptoms.
Almost 5 million people worldwide suffer from various forms of lupus, including SLE. Lupus can occur at any age, but typically appears in young people ages 15-45. About 90% of people living with lupus are women. When you look at the numbers you see that people most affected by lupus are young women in the prime of their lives and in their child bearing years.
May is Lupus Awareness Month. Please join the Lupus Foundation of America and the SLE Lupus Foundation in raising awareness of and learning more about this chronic, autoimmune disorder. Working together we can find a way forward in the treatment of SLE.