The beep-beep-beep of the alarm blares after hours of tossing and turning. As you reach across your pillow and grab at your phone to make it stop, your hand has trouble sliding the button to ‘off’ as your fingers are about twice the size they should be. The swelling only got worse as you attempted to sleep.
Once you finally get the alarm silenced, you pause for a moment and try to remember what it was you intended to do next. Was I going to brush my teeth? Am I getting dressed for work? Why can’t I remember what day it is? The brain fog is thick with uncertainty, but this is sadly a regular occurrence.
You rally with every fibre of your being to summon the strength to swing your legs over the side of the bed. But the stiffness throughout your body makes this a multi-step process, with each movement more painful than the last. The heat brought on by an all-too-frequent low-grade fever only adds to your fatigue. It’s like the energy has been drained from your entire being: Mind, body and soul.
Just another day in the life with lupus…
May is Lupus Awareness Month
Lupus is a long-term autoimmune disease that can cause severe inflammation and pain in any part of the body. Those who have the condition possess an immune system that attacks healthy tissue, leading to chronic fatigue, pain, fevers, rashes and in some cases, kidney disease or even death.
Yet every day, those who suffer with the condition are forced to carry on despite the pain and exhaustion. They often work full-time jobs, perform daily physical chores and take care of their families. Many of their symptoms are invisible…
In the U.S., the month of May is dedicated to raising awareness for the disease and uniting the broader community in helping to find a cure.
Fast Facts
- Anyone can develop Lupus.
- Lupus is not contagious.
- Symptoms vary, but the most common are joint pain/swelling, extreme fatigue and skin rashes.
- Lupus most often affects joints, skin and internal organs like your kidneys and your heart.
- The cause of lupus is still unknown.
- There is no cure for lupus.
- Those who are at higher risk for lupus include:
- Girls and women aged 15 – 44;
- People with a family member with lupus or another autoimmune disease;
- People of African, Asian/Pacific Islander, Hispanic or Indigenous descent.
Why butterflies?
You may have noticed that many websites, articles, merchandise and social media posts that mention lupus show butterflies as a symbol of the disease. This is due to the malar “butterfly” rash that approximately 50% of those with the disease will at some point develop, whether triggered by sun exposure or stress. The skin rash spreads across the nose and cheeks, creating a visual effect similar to that of a butterfly.
Using beautiful butterflies in reference to lupus represents the visibility of the disease (as other symptoms are largely invisible), and the wide variety of butterflies, which is synonymous with the myriad of symptoms and treatments, which can be vastly different for each lupus patient.
Pediatric Lupus
Of all the people who live with lupus only 10 – 20% of them are diagnosed during childhood. Though less common, those who develop the disease in their younger years often suffer more severe symptoms and life-threatening organ involvement than their adult counterparts. In fact, 2 in 3 children or teens diagnosed with lupus will develop lupus nephritis, lupus-related kidney disease that can lead to kidney failure.
Treatments
Due to the number of symptoms that can present during lupus, with varying degrees of severity, there is no single treatment prescribed once someone is diagnosed with the disease.
Aside from the standard recommendation to eat nutritious food, get sufficient sleep and exercise (as your body allows), there are often medicines prescribed to alleviate symptoms. Some of the most common include:
- Anti-inflammatories and steroids (to reduce swelling and pain)
- Anticoagulants (to prevent blood clots)
- Antimalarials (to protect skin and prevent inflammation)
- Immunosuppressives and biologics (to prevent the body from attacking itself)
In the most serious cases, if kidney failure occurs, dialysis or a transplant may be necessary.
Advocacy
After vital funding was cut for lupus programs in 2025 in the U.S., lupus warriors united and presented their stories to Congress, motivating the government to restore millions of dollars to the cause. This proves without a doubt that our voices matter.
This May, we encourage everyone to get involved. Here are just a few ways to make a difference:
Lucy Vodden Research Grant Award
I established this award as a Global Ambassador for the Lupus Foundation of America, in memory of my childhood friend Lucy, who passed from lupus in 2009. Since its inception, over $69,000 has been donated to the fund.
We are asking everyone reading this to increase that total and donate to support a promising next-generation approach to pediatric lupus care, which uses CAR-treg cell therapy.
If the research is successful, it could lay the foundation for future transformative treatments that target lasting remission vs. the existing approach that currently just manages symptoms. Perhaps most significantly, it would be safer than the traditional chemotherapy courses that are a typical treatment for pediatric lupus patients.
Members of The Pulse monthly program to benefit Education & Health projects and a few of our generous large donors have already gotten us more than ⅓ of the way to our goal for this grant.
Make a donation now to help us reach that vital total. Your generosity could literally save a young life…
“Purple Haze Too, 2019” by Julian Lennon is available as part of a Limited Edition of 10 Archival Photographic Prints. For purchase inquiries, start here.
If you don’t use credit cards or PayPal and prefer to donate by check, please make it payable to The White Feather Foundation and mail to:
Enterprise Bank & Trust
Attn: Deposit
12845 Towne Center Drive
Cerritos, CA 90703
Be sure to indicate in the memo section that the donation should be allotted to “Lucy’s Legacy for Lupus”.