🎵 Mr. Sun, Sun, Mr. Golden Sun
Please don’t damage me…
Mr. Sun, Sun, Mr. Golden Sun
I’m hiding behind a tree…
These little lupies are asking you
Don’t make us ache like we have the flu
Oh, Mr. Sun, Sun, Mr. Golden Sun
Please don’t damage
Please don’t damage
Please don’t damage meeeee…...🎵
We are officially in the heat of summer, and for many, the warmer days, blue skies, and sunshine are a welcome sight. However, for those who live with lupus photosensitivity, the lack of cloud cover and intense summer rays can be difficult to manage. In fact, they can cause so much discomfort that many choose to draw their curtains and hibernate until the changing of the seasons.
So instead of boycotting the next three months, we at More Than Lupus, thought we would “shine some light” on these helpful tips to bring you out of the dark and hopefully allow you to enjoy the sunnier months ahead.
What is photosensitivity?
Photosensitivity is listed by the American College of Rheumatology as one of the 11 criteria associated with a lupus diagnosis. It is defined as a varying sensitivity to ultraviolet rays (UVA/UVB) that come from the sun and other sources (i.e. fluorescent lights, tanning beds, nail salons). It is estimated that two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light.
Photosensitivity can affect those with all forms of lupus, but according to the National Institute of health, primarily exacerbates symptoms in widespread cutaneous lupus erythematosus and systemic lupus erythematosus.
Here are some photosensitivity facts:
Photosensitivity is thought to be caused by an increase in “apoptosis” or programmed cell death. Apoptosis is a normal reaction for the body to rid itself of dead skin cells, however, in lupus it seems to occur too frequently, which may lead to increased inflammation and even a rash.
Photosensitivity does not just cause rashes. Fever, fatigue, joint pain, and other symptoms can manifest from photosensitivity as well.
In a 2013 study, 83% of lupus patients reported having some form of photosensitivity with overall worsening of skin issues reported by 69% of lupus patients.
Going above a patient’s UV threshold can trigger lupus flares (increased disease activity). Each lupus patient is uniquely affected by UV rays.
Photosensitivity can occur INDOORS as well. Fluorescent lights, including compact fluorescent lamps (CFL’s) are considered energy-saving, however, emit more UV light than incandescent bulbs.
If a fluorescent lamp (usually long, white cylinder bulbs) are shielded by a plastic diffuser, there’s rarely a risk for people with lupus to be affected.
There are two basic types of rays in sunlight: UVA and UVB. Though UVA rays penetrate the skin more deeply, UVB rays are primarily responsible for sunburn and most skin cancers. However, there are approximately 500 times more UVA rays in sunlight than UVB rays, so it is important to find a sunscreen that protects against UVA since most tend to focus on UVB.
Additionally, it is important to "schedule your sun." Try to stay away from direct sunlight between the hours of 10 am to 4 pm. UV rays are especially intense during those hours and at higher altitudes, particularly around snow or water.
Find your city’s UV Ray Rating: Every city is given a rating by the National Weather Service. To find yours,click here: https://forecast.weather.gov/product_types.php?site=NWS?prodtype=ultraviolet
As mentioned above, just because you are indoors does not mean you are safe from UV exposure. Uncovered fluorescent and halogen lights and even copy machines have lighting mechanism that can emit UV rays which cause lupus photosensitivity.
Thankfully, there are shades, filters, and light bulb covers that are available to offer protection from indoor UV rays associated with artificial lighting. Look for shields with readings of 380-400 nanometers, which filters all UV types.
It is important to choose light bulbs that have the lowest possible irradiance (intensity). Try LED bulbs! Though there is not a ton of evidence to draw on regarding a decrease in photosensitivity, many lupus patients believe LED bulbs have little effect on their lupus. Try using UV-blocking shades to cover windows and prevent sunlight from streaming in.
Also, wear tightly woven clothing that covers your skin and a wide brimmed hat INSIDE when visiting brightly lit places.
Protecting yourself from the sun can help prevent lupus flares, so it is important to use a broad spectrum SPF AND wear sun protective clothing. Most doctors would recommend using at least an SPF of 70 or above that blocks both UVA and UVB rays.
It is essential to apply a generous layer of sunscreen (shot glass full) every 60 minutes, especially if you are in and out of water. According to the American College of Dermatology, it takes approximately 15 minutes for your skin to absorb the applied sunscreen. So apply indoors and set a timer, because your skin will not be protected until absorbed and you can get burned.
Remember, your skin is at risk from those harmful UV rays every time you venture outside, even if there is cloud coverage, so this summer, no matter what the forecast, make sure you wear sunscreen.
Regarding the right brand, it is always important to speak with your doctor about your skin and what will work best for you. Here are some of our top suggestions:
Vanicream Sunscreen SPF 50: Sejal Shah, a New York City-based dermatologist and founder of Smarter Skin Dermatology, suggests Vanicream's Sunscreen SPF 50, which was developed specifically with those with sensitive skin in mind. It is fragrance-free and provides broad-spectrum protection using only zinc oxide and titanium dioxide. It also contains castor oil and glycerin, both of which boost skin nourishment. $15
Neutrogena Sensitive Skin Sunscreen Broad Spectrum SPF 60: Dermatologist-loved brand Neutrogena is known for its non-irritating skin-care options, and its sunscreen offerings are no exception, it is formulated specifically for sensitive skin and has a very high broad spectrum SPF. $10
Anthelios Ultra Light Sunscreen Fluid SPF 60: La Roche-Posay Mineral blockers zinc and titanium dioxide are great and it is a non-irritating blend of chemical screens help protect the skin in this non-comedogenic, fragrance-free liquid. $29.99
Cetaphil SPF 50 UVA/UVB Defense: Gentle for Sensitive Skin Hypoallergenic and fragrance does not cause irritation. Available at most stores.
Colorescience Sunforgettable Brush-On Sunscreen SPF: Another recommendation for a quick on the go protection is Colorescience's Sunforgettable Brush-On Sunscreen SPF, which comes in both translucent and tinted options. It's so lightweight that it feels (and looks) undetectable. As far as UV protection goes, it contains titanium dioxide and zinc oxide, both of which work in tandem to protect the skin, while red seaweed keeps it conditioned. $52 (this should be used in addition to normal SPF protection)
The people at wearshade.com have come out with the 2nd generation Shade Sensor that can be worn on your wrist. Shade is the brainchild of Dr. Emmanuel Dumont, who, while doing his postdoctoral research on wearable UV measurements, learned of the difficulties lupus patients face in preventing flares triggered by sunlight.
The shade sensor is designed to measure UV intake, personalize a UV threshold, and allow a patient to be alerted when they have hit their personal daily UV allowance.
The shade has received excellent online reviews and was even endorsed by US soccer star (and lupus survivor) Shannon Boxx.
LogicInk, is another option if you are looking for a temporary and affordable UV sensor. Applied to your skin like a temporary tattoo, LogicInk shows the irreversible accumulation of UV on your skin and helps you stay within your daily recommended UV limit.
Having used both the Shade sensor and LogicInk wearable UV temporary tattoo, I recommend BOTH, and suggest that both are appropriate in various situations.
UV Protectant Clothing:
Coolibar is the only brand I have encountered that guarantee UPF 50+ clothing and accessories. Coolibar is effortless sun protection you wear, because wherever clothing covers your skin, you’re UV protected. The clothing is great for swimming, outdoor activities, and more!
You can find UV protective clothing at most outdoor stores like REI, Columbia, and Dick’s Sporting Goods.
Vitamins and Supplements:
Regarding vitamins and supplements, it is best to ALWAYS discuss taking ANYTHING with your doctor or health care professional.
The people at Anirva have developed a supplement specifically to help protect you from sun damage from the inside out. Their website states that SOLCARE™ provides a combination of antioxidants, carotenoids, and other nutrients thought to be essential for supporting healthy skin that is subjected to outdoor exposure. There website states that SOLCARE may:
Support skin immunity