What is your name?
Hi, my name is Nina.
What is your skin condition?
I have systemic lupus erythematosus, SLE for short. UV rays trigger an autoimmune response that can affect a huge variety of things, to include vital organs such as the heart, kidneys, lungs and brain, as well as skin. There are other triggers for it, but thus far UV rays have been the hardest to avoid.
How does your skin condition affect your day-to-day living?
While externally what you see from UV exposure is a rash, known as a “butterfly” rash due to its shape, the more dangerous issue from these flare-ups is internal organ damage caused by my body’s immune system thinking my own body is the enemy and attacking it.
What you have found to alleviate it?
To help prevent flare-ups I have to take a variety of steps daily, and one of the most challenging things has been figuring out how to reduce UV exposure as much as humanly possible. It's harder than you think, too.
Did you know that fluorescent lights also emit UV rays? It’s small enough amounts that most people don’t realise it, but when you’re UV sensitive you do.
I wear UPF clothing head to toe, anytime I step outside my house. I get to rock ginormous hats and gloves in addition to UPF rated clothing. That is difficult as well because I have to wear high collared long-sleeved shirts, gloves, pants, boots and hats even in high summer (especially during high summer!).
In addition, I’ve hunted out SPF foundation and lipstick that is physical sunscreen (chemical sunscreens cause skin reactions), which is surprisingly difficult to find in SPF 50.
It’s been a major adjustment period emotionally as well as the physical changes such as clothing. It goes so much further than avoiding UV rays and has required that I reevaluate and make adjustments in almost every corner of my life, in addition to the medications I have to take.
Each step helps incrementally and it takes all of it to manage my lupus. I am still getting the hang of it but I'm getting there.
This is what my face rash looks like:
This is me sporting my SPF makeup and ginormous hat. You can’t see it, but I’m also wearing my Solbari gloves here.