A Big Secret Revealed: Lupus Is Killing More Young Women Than Reported

Health Writer

Lupus has been identified as a leading cause of death in young women, according to recent analysis done by the Centers of Disease Control and Prevention (CDC). The report suggests that from 2000 to 2015, systemic lupus erythematosus (SLE) was identified as either an underlying cause or main cause of death among 28,411 females, as well as one of the 20 most-common causes of death in females ages five to 64. A closer look at the data shows that SLE was the 10th leading cause of death in the 15- to 24-year-old group, 14th leading cause of death for both the 25-to-34 and 35- to-44 age groups, and the 16th leading cause of death in women ages 45 to 54.

A significant finding was that among the 15-to-24-year-old female group, SLE was identified as the leading chronic inflammatory disease, ranking higher than diabetes, chronic lower respiratory disease, nephritis, pneumonitis, and liver disease.

SLE is an autoimmune disease. The body’s immune system attacks healthy tissue, and in this case, it can affect the skin, joints, kidneys, brain, and other organs. The cause of this autoimmune disease is not known, but it is more common among women compared to men and has a higher rate among women ages 15 and 44. The American College of Rheumatology has established criteria for the diagnosis of SLE. Diagnosis can be difficult and can often take time — doctors may tend to rule out a host of other conditions first.

A study from 2005 also referenced a lack of appropriate recording of causes of death, specifically with regards to deaths associated with SLE. One reason may be that a significant acute health issue is easily identified, and the doctor may not recognize that an ongoing condition like SLE may have predisposed the person to the newer acute illness, making them more vulnerable to a serious infectious process or to organ failure or some other serious health issue. A patient can also land in an emergency room with acute illness, die, and no one ever identifies the past history of SLE.

“You have to always be your own best advocate when working with a doctor — if you think something is wrong, you have to make noise and push for answers.” - Lisa Ellison, SLE patient and advocate

I reached out by email to Dr. Aelita Khachatrian, a board-certified internist and rheumatologist in southern California. I asked if the results of the study surprised her and she said: “I am certainly not surprised at the under-reporting rates of SLE in death certificates. When SLE patients are hospitalized, many hospitalists may not understand the complexity of certain SLE patients since the disease is difficult to diagnose clinically.”

Dr. Khachatrian went on to point out that the disease is multifaceted and presentation can vary, so patients can present with a serious complication from SLE having never been formally diagnosed with SLE. Even if a person has mild SLE symptoms, “it does not mean the patient does not have early cardiovascular disease or risk of infections.”

Dr. Khachatrian also pointed out that “the physician completing the death certificate is often an intern or a resident doctor or a covering physician, who might list the cause due to organ failure (kidney/heart disease), rather than SLE.”

I asked Dr. Khachatrian if she had alternative explanations for under-reporting of SLE as the cause of death in young women.

“I believe the under-reporting is also due to several deficiencies. Many patients have a poor understanding or knowledge of their disease state and might not even know what medications they are prescribed,” she said. “This can often delay the diagnosis/work-up, and perhaps steer the admitting doctor in another direction. From my experience, I think SLE can be often blamed for every possible admission that walks through the ED (emergency department) door. Despite this hypervigilance, this does not suggest that certain subtle signs or symptoms cannot be overlooked by the same inexperienced clinician. Therefore, having access to a local rheumatologist is pertinent to avoid any over or under diagnosis of the disease.”

I also spoke by email to Lisa Ellison, a young woman who was diagnosed with SLE. She said that initially when her symptoms presented, she was diagnosed with “sinus issues and headaches.” When the joint pain started, she was told it was most likely rheumatoid arthritis, but SLE was mentioned as a possibility because of the other symptoms. Her bloodwork combined with her symptoms did point to lupus, but she said: “You have to always be your own best advocate when working with a doctor — if you think something is wrong, you have to make noise and push for answers.”

I asked Lisa if the study results of under-reporting of SLE as the cause of death in young women surprised her. She said not at all.

“I’ve seen similar research about women suffering from strokes due to birth control that could have been prevented,” Lisa said. “In general, I believe women tend to under report and underestimate their own symptoms with their healthcare providers. We’ve been trained to be strong and downplay everything because we are (socially) expected to be so strong. We take care of others before ourselves.”

Lisa offered some tips to women who may be struggling with new or undiagnosed symptoms: “You have to be your own advocate. If you feel like something is wrong with your body you must be honest and forceful with your doctor. The honesty part is really the most important. You have to report all of your symptoms and be open with your healthcare provider so you can get accurately diagnosed.”

I also asked her if she had any tips for doctors who deal with young women and this kind of condition that may not have a clear-cut presentation. Her tips to doctors: “Ask questions. If someone says they have had joint pain, for example, be thorough about the intensity and frequency. Sometimes people, especially young women, tend to downplay and not realize how dangerous their symptoms are.”

As a final note, Dr. Khachatrian pointed out that there was no mention in the study as to whether a rheumatologist was consulted in the management of any of the subjects.

“Perhaps if a specialist is involved, there may be more accuracy on reporting the true cause of death,” she said.

See more helpful articles:

10 Ways Lupus Affects the Body

Lupus and RA: A Frustrating Combination

5 Tips for Exercising With Lupus