Bright ideas: Members share 7 head-to-toe tips for sun safety with lupus

Posted June 9th, 2017 by

With summer just around the bend, we’ve rounded up PatientsLikeMe members’ sun-safety and photosensitivity tips for people living with lupus. Photosensitivity is increased sensitivity to sunlight and other sources of ultraviolet (UV) light, sometimes causing a rash or other skin reaction.

On PatientsLikeMe, thousands of people with lupus say they’ve experienced photosensitivity – more than half of them reporting it’s “moderate” or “severe.” Here are a few ways members are coping with it…

Lupus photosensitivityLupus Photosensitivity

Even more tips

“I’ve found it most effective to switch to a moisturizer and makeup with added sun protection. I also keep a floppy hat hanging by the front door for yard work.” – LilliGirl

“I have invested in several neutral, long sleeve jackets. They help by covering my arms but are athletic/highly breathable and actually keep me cooler than allowing the sun to beat down on my skin ever would.” – LilliGirl

“I find I can slowly build up a bit of ‘tolerance’ by sitting out in my garden. I start by doing 5-10 minutes for a few weeks and slowly build it to 30-40 minutes eventually.” – FABWHEELIE

Reminder: Not all sunscreens are created equal. Dermatologists recommend using sunscreens that contain the ingredient Mexoryl (which offers the best coverage, blocking UVA-1, UVA-2 and UVB rays) or Helioplex (which blocks UVA-1 and UVA-2). Also, apply sunscreen 30 minutes before heading outdoors to ensure it’s absorbed, and wear sunscreen even on overcast days, which also bring UV rays.

Living with lupus and photosensitivity? Check out 56 forum posts about lupus

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