What You Should Know About the Statistics for Lupus Death Rates

How many times have we seen the words, “Another butterfly has gained her wings,” next to an image montage of a beautiful person gone too soon from complications of lupus? “Butterfly” is a term we give ourselves after the butterfly shaped hallmark malar rash across the cheeks and bridge of nose. Though we may not personally know those who’ve died, or only peripherally through media have a sense of who they are, their death touches our very soul. Many are women, a few are men, a lot of them way too young to have left this earth. A few of the departed might be very close friends or even family members. Those are the ones who break our hearts the most. It is never easy to accept that they’ve died, even if that person was struggling tremendously in their mortal body and is now pain-free and floating somewhere where there is nothing but beauty.

We feel sad, we feel shocked, we pray for their eternal rest, and, if you are like me, we feel angry. Angry primarily at Lupus. The hashtag #WeNeedacure is the battle cry we plunk out on our keyboards or cell phones. Yet each time we call out, our pleas seem unanswered as the very next week another beautiful picture pops up on our newsfeed of another butterfly leaving this earth. In my own online circles, I believe at least a dozen, maybe more, have passed away since last summer. I have tried to compile their memorial posts so that I remember who they are. But sometimes it seems there are too many and I’m likely to lose track. Knowing our butterflies are dropping like, well, butterflies, can get overwhelming and discouraging. We will remember their faces, but who will log their numbers?

Four years ago I attended the National Lupus Advocacy Summit in Washington DC. The trip was an eye opener. Organized by the Lupus Foundation of America (LFA), we were a large group descending on the Capitol from all across the country. From Hawaii to Maine, lupus advocates came to form contingents who would attend scheduled appointments with each of our representatives and senators on Capitol Hill. The summit was a whirlwind of excitement and inspiration. Our voices, we felt, would finally be heard. And the intimate setting of each private meeting proved to allow just that.

The night before the next day’s orientation, where we would sit at designated tables with the rest of the advocates from our state (mine was Illinois) there was a large summit meeting of all attendees. After the LFA organizer gave her talk, the room was open for questions or comments. There were many memorable experiences that week, including getting wheeled in a wheelchair through the underground tunnel that connected the House and Senate office buildings. But what was said that first night has stayed with me ever since.

An advocate stood up and she exclaimed, “We have a big problem! We have a big problem in our community that a lot of people don’t know about. And that problem is lupus mortality rate.”

The attendees in the room, including myself, turned toward her, riveted by her commanding presence and the urgency with which she spoke.

“The statistics are wrong,” she explained. “People are dying every day of lupus and it is not reported. The ‘cause of death’ will say the person died of a heart attack, or kidney failure, or pneumonia, or stroke, or meningitis, or pulmonary embolism.”

She went on to emphasize that “primary cause of death” is always something other than lupus. And that “secondary cause of death” is rarely ever listed as lupus, if listed at all on the death certificate. She urged us to tell everyone we know how imperative it is that this under-reporting change. Her very valid point being, how are doctors and researchers and statisticians and even the Lupus Foundation of America going to be able to comprehend the urgency of our mortality rate? People are dying. Though I am 100 percent sure the LFA understands and cares immensely about this reality, they wouldn’t be able to report anecdotal mortality rate statistics.

Since systemic lupus erythematosus (SLE) can affect any organ of the body, including the blood and vascular system, repeated organ damage from disease progression over time or something as sudden as a blood clot can be blamed for death. Even more is unknown about fatality from complications of cutaneous lupus erythematosus (CLE), whose butterfly rash is more pronounced, raised, and painful and can extend anywhere on the skin. Their organs can also be affected.

The summer before I attended the Lupus Advocacy Summit, an acquaintance with systemic lupus got bit by a mosquito and contracted West Nile virus. She was in a coma for a week. Because of her body’s inability to fight the virus and high doses of steroids and immunosuppressives, she passed away. Despite her having lived with lupus 35 years since the age of 16 and having had two kidney transplants, the cause of death on her certificate was listed as West Nile virus.

Four years have gone by and that advocate’s remarks remain emblazoned in my mind. On occasion there has been a Facebook post from a family member or spouse about one of our fellow lupie warriors who are slipping away, in a coma, on death’s door or have recently died. I think about what my lupie sister said at the Lupus Advocacy Summit so long ago and I wonder how to diplomatically suggest to them to be sure the doctor puts lupus as either primary or secondary cause of death. How does one convey the urgency of this very real problem to a loved one who is beside themselves with fear and grief?

Each person, whether they have a chronic illness or not, has a different relationship with death. For some of us who’ve had near-death experiences, we might feel peaceful about the inevitability of it. Others who believe that something like heaven is waiting on the other side to take them home, might also be unafraid of death. Others might tend to put the subject of death out of their minds, some might fear it, and some fight to combat death tooth and nail. Some just want to be put out of their misery. Some have a combination of feelings toward it.

For myself, having been lifted up out of my struggling body on a hospital bed while floating blissfully toward a white light, I know that in death there is peace. But I also feel compelled to stay alive. I do every thing I can to keep from dying. Part of it is my love of life. Despite the daily struggles that lupus brings, and on occasion I just want my struggles to end, there are just enough joys and loves and relationships and music and natural wonders here on earth that keep me around. I also jokingly say that I have major fear of missing out (FOMO). I don’t want to miss out! And there have been a few times when FOMO has literally saved my life! On some nights I’ve been in the hospital and intuitively close to death, I’ve gone through a slew of emotions from crying, to resistance, to eventual acceptance. My organs are shutting down and I can feel my life slipping away. In hopes of finally getting some sleep in the hospital with the knowledge I might not wake up in the morning, I offer a simple prayer, “God, if it is Thy will…”

It is on those mornings that I do wake up that I know my life has meaning and purpose.

So today it is my purpose to tell all my fellow lupus sisters and brothers to make your wishes known. Whether or not you have composed a “medical directive” tell a family member or a partner or spouse about this. Or if you are in the hospital, let the doctor know, “If I die, for whatever reason, it is of utmost importance that lupus is listed as either primary or secondary cause of death.”

Getty Image by rudall30