Our Poll Results are in! Nearly 1,000 people with lupus reported about the butterfly rash symptom.

If you didn’t get a chance to answer and wish to, you can still answer the poll on butterfly rash prevalence. As we receive additional responses, we will update this result.

Lupus and the butterfly rash

Many organizations and bloggers connected to lupus use the butterfly as a logo or iconic mark. While not all people who have lupus will have the rash, in many ways the butterfly has come to symbolize lupus.

Learn more about the butterfly rash and lupus

Poll Question: Have you gotten the butterfly rash?

Lupus & butterfly rash symptom poll methodology

The poll was posted on LupusCorner. Additionally, the post was published in a public Facebook group, MyLupusCorner (join us for future polls, interesting content, and an engaging community!). As such, this poll could be answered in two ways:

• From the list of options on the LupusCorner page (Yes/No/I do not have lupus)
• In free-text responses in the Facebook comments

We have analyzed the comments to fit the responses into the appropriate category. Comments that did not affirm that a person had or did not have the butterfly rash were removed from the sample.

Lupus & butterfly rash symptom results

First, we will combine both sources of responses. There were 969 total responses. In this sample, 53.4% of people with lupus self-reported that they experienced the butterfly rash at some point in time. There were 10 responses where the subject noted that they did not have lupus. While those are reflected in the chart, they are not accounted for in the calculated prevalence statistics as we are aiming to determine the amount of people with lupus that report the butterfly rash symptom.

53.4% of people with lupus experienced the butterfly rash

Prior research into lupus and butterfly rash symptoms

The LupusCorner poll on the prevalence of the butterfly rash was prompted by inconsistencies in the literature. Despite general acknowledgement of  variability in disease severity among people of different racial and ethnic backgrounds, it is interesting to note that many prevalence rates of malar rash are still described generically. We note that our poll did not gather ethnicity or race from participants and that our finding may be an oversimplification of prevalence. Additionally, we did not consider age-of-lupus-onset. A study on a cohort in China found that late-onset SLE (defined as onset of the disease after age 50) was more benign, with a significantly lower incidence of the malar rash. Because of this, in future studies, it would be prudent to differentiate lupus onset age in addition to racial/ethnic factors.

Wikipedia reports that the malar rash, the medical name for the butterfly rash, is “present in approximately 46-65% of lupus sufferers and varies between populations.” Two studies are referenced to support this claim. Let’s look at those studies.

Lupus, malar rashes, and two distinct US Hispanic subpopulations

A study by Vilá, L. M., et al., examined two, young, US Hispanic subgroups – focusing on 105 Hispanic SLE patients from Texas and 81 SLE patients from Puerto Rico. The average age, in years, was 33.1 and 37.5 for the Texas population and Puerto Rican population respectively. The study found significant differences between 7 different clinical manifestations and 3 different autoantibody measures. Additional research is necessary to better understand why these differences exist — with particular interest paid to nature/nurture differences and access to healthcare services.

With respect to the malar rash, significant differences were found between these two populations (P = 0.0074). The Texas cohort experienced the rash in 45.7% of participants while the Puerto Rican cohort experienced the rash in 65.4% of participants. If these numbers look familiar, it’s because this is what was used on Wikipedia to describe the prevalence of the rash in people suffering from lupus.

Though not completed in the original study, we combined the population subgroups to find the total prevalence percentage, regardless of cohort. Interestingly, the prevalence was 54%, nearly identical to the finding of our poll

Malar rashes in Tunisian populations with lupus

This study by Houman, M H., et al., focused on a Tunisian population, and noted that, when written in 2004, there were few studies on Arab populations and effectively zero studies on North Africans/Tunisians. This study retroactively enrolled 100 SLE Tunisian patients (92 women and 8 men) into the study, with an average age of 32 years. It is noted that 19 of the patients were over 50 upon diagnosis, but age-of-onset figures do not appear in the results section for variability of malar rash.

This study found that 63 of the participants experienced the butterfly rash (63%). Also cited in the Wikipedia entry, it is possible that this figure was used as additional proof of prevalence.

Malar rash and lupus as it relates to cutaneous and non-cutaneous disease manifestations

A study published in 1992 by Wysenbeek, A. J., et al., focused on all types of rashes. The study followed 81 patients with lupus at the Beilinson Medical Center in Israel. Unfortunatley, in the Method section, no additional information regarding the demographics of the participants were provided. Still, this study identified that 40 of the 81 (49%) people with lupus experienced a malar rash.

So there’s a consensus on prevalence of the butterfly rash? Not so fast.

While the top two studies are referenced by Wikipedia and the third is discoverable via a simple Google search, they are not an exhaustive review of the research into the prevalence of malar rashes (NOTE: Each of the studies discussed included malar rash prevalence in the study but was not entirely focused on answering that question). An additional, larger study found a lower prevalence of the malar rash.

Cervera, R., et al. (2003) conducted a multi-center research study that lasted 10 years and was made up of a 1,000 person cohort from 7 European countries. “A total of 350 patients were from Spain, 250 from Italy, 248 from the United Kingdom, 50 from Poland, 50 from Turkey, 37 from Norway, and 15 from Belgium.” It is worth noting that in addition to being comprised of varying ethnic and racial populations, these countries have varying cultures and availability of healthcare. As mentioned above, these factors need to be considered when evaluating any study. Despite this consideration, the results presented are determined by combining all of these groups into a single cohort.

During the course of the 10-year study, 311 of the 1000 (31.1%) participants with lupus experienced the malar rash. The study noted that the presence of malar rash, as well as other clinical manifestations like arthritis, was higher during the first 5 years of the study as compared to the second 5 years.

So the true prevalence of malar rashes in lupus is…

dependent upon who is asking. It may be anywhere between 31% and 65%. These numbers may be dissatisfying — but, taken in context of the various studies, it serves to highlight two important points:

Future research on lupus must consider:

1. racial/ethnic diversity; and
2. lupus age-of-onset