May is National Lupus Awareness Month
Updated: May 20, 2020
Lupus Month Blog Part 1 - Lupus Basics
Many of us may be feeling stressed and exhausted under the current outbreak, and some of us might use prescription medications and plant medicine to help us maintain our health. Imagine, however, your condition heightens your risk of complications from COVID-19 and when you brave the trip to the pharmacy there’s a shortage of the prescription you rely on. That’s a reality for many people living with Lupus.
May is national Lupus Awareness month, and as part of our mission to bring empathy and education to our network we are dedicating our blog this month to Lupus information and conversations.
This post is part 1 of a three-part series that will discuss what Lupus is, talk to people living with the condition, and wrap with treatment options and the status of research on cannabis as a therapy for Lupus.
What is Lupus?
Lupus is a chronic auto-immune disease. The over active immune system attacks healthy tissues throughout the body, especially the skin, joints, the kidneys and heart. There are four different types of Lupus, the most common of which is systemic lupus erythematosus (SLE). Lupus can be mild or severe, and symptoms can appear and disappear periodically. Like other auto-immune disorders, things like stress, illnesses, injury or medications can cause sudden flares of symptoms.
What are the symptoms of Lupus?
The most common daily symptoms of Lupus are chronic pain and fatigue. The Lupus Foundation of American reports that 65% of people with Lupus say chronic pain is the most difficult part of their daily lives, and 76% say fatigue caused by Lupus has forced them to cut back on social activities(1). Some people also experience skin rashes, sometimes on their faces, that are made worse with sun exposure(2).
Lupus can have severe health effects as the immune system injures tissues throughout the body. In the long term the damage to the heart and kidneys can lead to kidney failure, cardiovascular disease, and heart attack.
How many people live with Lupus?
We don’t have any specific statistics for Oregon, but nationwide an estimated 1.5 million people live with some form of Lupus, and 16,000 more are diagnosed every year(3).
That’s how many people have Lupus, but the question of ‘who’ is equally important. Lupus disproportionately impacts women young and middle-aged women of color. About 90% of people with Lupus are women, and most are between the ages of 15-44(3). It is two to three times more prevalent in women of color, with recent research finding that it affects up to 1 in 537 young African American women(3). The prevalence of the disease among indigenous women is less well understood, but some studies have shown its prevalence among indigenous women to be equal to, if not higher than, that of African American women(4). A recent study led of investigators at the NYU School of Medicine also found that Hispanic and Asian women were diagnosed with Lupus more frequently and have more aggressive disease than their white counterparts(5).
Journey to Diagnosis
While Lupus can be a deadly disease, its symptoms can be appear and fade, can be non-specific, can mimic those of other conditions, or be written off as psychological rather than physical. It is also more common in communities of color who already experience health care disparities.
All of this can lead to a long and frustrating path for patients who know something isn’t right. According to a 2015 article in the Annals of Rheumatic Disease it takes patients 6 years on average to confirm a Lupus diagnosis, and in that time they see an average of 3 different providers(4). This means that many patients with Lupus have endured a frustrating, exhausting journey to diagnosis and long before they begin treatment.
That’s our overview of the basics of Lupus. Stay tuned for our next post where we’ll talk with someone living with the condition about her journey, daily life, and what she wishes more people would know about Lupus.
In addition to the citations below, we recommend checking out the following pages for general information about Lupus:
(2) The Mayo Clinic. Lupus Symptoms. May 2, 2020. (3) The Lupus Foundation of America. Lupus Facts and Statistics. May 2, 2020 (4) Bannow, Tara. "In the Dark About Lupus" The Bend Bulletin. May 8, 2017