April is Sexual Assault Awareness Month. You may be wondering, “Why is a lupus nonprofit writing a blog on sexual assault awareness?” The answer may surprise you.   There is growing evidence that exposure to sexual trauma and other forms of abuse have been shown to increase the risk of developing lupus.   Statistically, many of you reading this will have endured sexual and/or physical trauma before being diagnosed.  In this blog, we hope to present information to the best of our ability, as we approach it delicately while holding space for the many emotions that may ..read more

I was diagnosed with lupus in June 1992.  It took me six years to get diagnosed.  I was on glucocorticoids (Prednisone/Prednisolone), until in October of 1997, then I started taking hydroxychloroquine (HCQ).  In July 2005, my ophthalmologist found hydroxychloroquine retinopathy on one eye, and I discontinued Hydroxychloroquine.  There are good articles on hydroxychloroquine and retinopathy written by doctors such as [6].  However, as an Asian lupus patient of many years, I just wanted to share my experience with you and let you know that it is okay.   After ..read more

We have all been told those infamous words, “You don’t look sick,” more times than we care to recall.  Due to this, I thought I would take a different spin on that ever-so-popular saying by digging deeper into why this seems to be such a persistent statement addressed to most of us in the chronic illness community. Why do people say that?  I think the better question is, why do people feel the need to label, separate, and to enforce such a vast divide between the appearance of the “sick” and the “healthy” to feel comfortable and safe?  And why, if we blur the lines, if we dare n ..read more

What is the most common response when someone asks, “How are you feeling?” If you are like the majority of lupus patients, the first thing you think but the last thing you WOULD say is, “Well, my GFR is not looking good, my joints are killing me, I am anemic, and my medication side-effects are awful.” In actuality, the first thing you would say is usually this: “I’m fine.” This is common in the chronic illness community, but do you ever wonder why? Why is it so hard to say the truth and so much “easier” just to say, “I’m fine?” In my humble opinion, the reason it is less of a hassle to say “I ..read more

Lupus is a challenging and complicated condition to live with, which makes sense why it would be difficult to explain when someone asks you about it. Giving a straightforward and honest answer may seem like the most logical thing to do; however, beneath your response, there could be a lot of feelings that can make you possibly go into fight, fight, freeze, or fawn mode, especially if you are put on the spot. In this blog, I will share with you what I say when people ask ME, “What is lupus?” I will explain why I have thoughtfully and carefully curated this response from many years of living wi ..read more

The pandemic was isolating. As a single gal with an autoimmune disorder, there were elements of working from home that were a dream come true. But the loneliness, isolation, and stress were powerful components that threatened to pull us apart from within and without. As we each emerged from our pandemic cocoon, a common thought seemed to be, “When will things ‘go back to normal?’” It didn’t take long for me to realize that was not to transpire as I expected. Musical theater had been professionally decimated, and I found myself in discussion to pursue major surgery in 2023 for a partial hyster ..read more

Lupus is a complex condition requiring doctors to often think outside the box regarding treatment and symptom management. There are different categories of medications and therapies to treat lupus, and this blog will address a medication that has become increasingly popular in its use to treat various lupus complications. It is a medication that sometimes can feel scary to read or hear about. We hope this information will help alleviate the fear of the unknown regarding Rituxan for treating lupus. What is it? Rituximab (Rituxan) is a commonly used biologic drug (sometimes called a “biological ..read more

Scleroderma is an autoimmune disease that affects close to 300,000 people worldwide. It attacks the body's immune system, killing the healthy cells thinking they are enemies. When you have scleroderma, your skin gradually tightens and thickens or hardens. It can't stretch like it used to, causing fibrosis or scarring involving internal organs like the heart, lungs, and esophagus. At this time, there is no cure for scleroderma; there isn’t an official known origin. Scleroderma can also constrict or narrow tiny blood vessels, causing poor circulation and vascular issues in the body. If you had ..read more

“Exercise is as important to living as eating and sleeping.” - Don Thomas, Jr. M.D., author of The Lupus Encyclopedia We recently premiered our latest educational event, "Lupus Fatigue and Weight Management featuring Dr. Don Thomas, Jr. M.D. and patient advocate and fitness professional, Ashley Nicole. The event's goal was to break down how having a healthy BMI, good nutritional habits, and appropriate exercise have been scientifically proven to decrease lupus fatigue and many other avoidable issues. Our hope was to encourage and motivate the lupus and RA community to become aware of their bod ..read more

INTRO If you were asked to "describe your personality," what would you say? Are you more open or cautious? Impulsive or a planner? Outgoing or quiet? Are you a “people-pleaser" or do you "tell it like it is”? Are you a bit intense, or fairly laid back? Perhaps you've already stumbled across the "Enneagram," the "Myers-Briggs," a "Cosmo Quiz" or other assessments to find out "who you are." No matter what "type," imagine if you discovered that changing your personality was actually possible (and that it could make your life better if you did). Would you be curious enough to try? A few years ago ..read more