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Hi Julia,I have a question for you. My daughter was recently (last week) diagnosed with SLE. She has been a lifelong sun worshipper so the sudden sun sensitivity has hit her really hard. She loves the hot weather and sunlight so much she moved to FL a few years ago! She now needs a good daily moisturizer with zinc oxide or equivalent sun block. Any suggestions? Oh, and she is a first grade teacher so she spends at least 9-10 hours a day under florescent lights. Another new daily danger with which to contend. It just never stops with AutoImmune diseases does it? Maybe your readers have offered suggestions in the past? If not, perhaps you could ask now. It is a year round hazard after all.
Thank you,
Katherine
First off, Katherine, you're right: it just never stops. Life in the autoimmune world is never boring, is it? You're also right about the importance of protecting ourselves from UV light from both outdoor and indoor sources.
The Johns Hopkins Lupus Center makes these recommendations for sunscreen use in autoimmune disease:
50% of all people with lupus experience sensitivity to sunlight and other sources of UV radiation, including artificial lighting. For many people, sun exposure causes exaggerated sunburn-like reactions and skin rashes, yet sunlight can precipitate lupus flares involving other parts of the body. For this reason, sun protection is very important for people with lupus. Since both UV-A and UV-B rays are known to cause activation of lupus, patients should wear sunscreen containing Helioplex and an SPF of 70 or higher. Sunscreen should be applied everywhere, including areas of your skin covered by clothing, since most clothing items contain an SPF of only about 5. Be sure to reapply as directed on the bottle, since sweat and prolonged exposure can cause coverage to dissipate. [Bolding mine.]
Here's what WebMD has to say about skin protection for lupus patients:
"There's a tremendous amount of confusion about sunscreens," says Andrew G. Franks, Jr., MD, director, Skin Lupus and Autoimmune Connective Tissue Disease Center and clinical professor of dermatology and medicine (rheumatology) at New York University School of Medicine. "Patients with lupus need to avoid ultraviolet [light]. We want them to be sun-conscious and sun-educated."
"It's very important, whether you're photosensitive or not," he says. You may not get a rash after UV exposure, but there could be an increase in auto-antibody production, which can create disequilibrium in the status of your lupus.
Franks recommends using the highest SPF, but emphasizes that sunscreen is not a substitute for taking common-sense precautions like sun avoidance or wearing sun-protective clothing. He says the current numbers only delineate UVB protection, but there is a star system in development that will spell out UVA protection.
"The key is to find a nonirritating, extremely broad-spectrum sunscreen to wear everyday," says Noelle Sherber, MD, dermatologist in private practice in Baltimore. Her top recommendation is La Roche Posay's Anthelios SX Daily Moisturizing Cream SPF15: "The active ingredient, Mexoryl SX, is uniquely effective due to its spectrum of UV protection that fills a gap in other chemical sunscreens in the short UVA range. The formula is gentle and moisturizing."
The Sjogren's Syndrome Foundation Patient Education Sheet entitled 'The Sun and Sjogren's Syndrome' describes UV protection guidelines and can be found here.
Do you use daily sunscreen, sunblock, or wear UV-blocking clothing? What's your favorites? Share your recommendations in the comment section below.
7 comments:
This is going way WAY back for my brain- but I'll try to throw this out there and someone with the extra cells can look into it? Gads.
Years ago when I worked corporate consumables purchasing. Our group was handling the purchases related to the new ADA changes. Many disabilities. I remember material regarding the changing of light bulbs from the old florescent to a warmer bulb. Companies that switched bulbs actually found a boost in productivity! (So, it wasn't just for an ADA perspective)
Another simple thing that I seem to forget often is wearing a hat. SO simple but hard to remember. Maybe if she can find a hat, have the kids participate in decorating it also- the kids will help her remember to wear it. (all the other teachers will want a cool hat too!)
Hi, I live in sunny Florida & have gotten rashes from many different sunscreens over the years & the ones that work best for me are Eucerin spf 15 for everyday use & for outdoor use is Super Goop...it's expensive but it can be purchased in a small trial size & in a large pump size if you use it a lot. It is waterproof & sweatproof & lasts a long time when at the beach...but I'd definitely try other less expensive sunscreens first to see if they work for you.
Last year I had a small mole that had changed shape, removed. It was melanoma. Since then my dermatologist recommended Neutrogena Ultra Sheer sunscreen 85, which I can't get, so I use 110 spf. I use this from March until November, the hottest and sunniest times where I live (Canada).
It is UVA/UVB, waterproof,sweatproof,and doesn't clog pores.
I use Neutragena sensitive and my son who is allergic to most sunscreens tolerates vanicream sunscreen . Vanicream is online.
You can use makeup. I like the new mineral ones that have come out. Also, I buy clothes with sun protection, they are expensive but if you break down the life of the clothes over the time you will use them, it's worth it. Mostly, I like that light idea. She is allowed by the peoples with disability act to do what needs to be done to protect her health in her work environment.
My favorite moisturizer/sunscreen for my face is by Peter Thomas Roth. It's expensive, but a small amount goes a long way and it feels like heaven on my skin. (It's one of the few moisturizers that also has both UVA and UVB protection.) I then wear mineral makeup with an additional SPF on top. My favorite everyday sunscreen for the rest of my body is Neutrogena Ultra Sheer.
I have struggled with finding the right sunblock and now that I have, I will never use anything else. Vanicream! It's a little pricey but very worth it.
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