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| Dawn Isherwood, RN, BSN |
Health Educator, Lupus Foundation of America
We hope everyone is enjoying the start of the spring season and the warmer weather!
Each year, as the flowers start to bloom and the weather gets warmer across the country, calls into the Lupus Foundation of America significantly increase with questions about light sensitivity. Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light -- or both. While we all know it is not possible, especially this time of year, to avoid ultraviolet light all together, for those living with lupus, it is important to protect yourself from these strong rays.
Photosensitivity or abnormal light sensitivity is a major symptom of the cruel and mysterious autoimmune disease we call lupus. If you are living with lupus, exposure to the sun can cause skin rashes. Beyond skin rashes that can develop, exposure to the sun, as well as artificial inside light, can cause increased disease activity with symptoms such as joint pain, weakness, fatigue and fever. This is not exactly the reaction we all want when enjoying the warm sun.
So why do people with lupus have this reaction to ultraviolet rays? Normally skin and other cells that are sufficiently damaged by ultraviolet light die through a process known as programmed cell death, or "apoptosis." The body then gets rid of the dead cells. Unfortunately for those who live with this devastating disease, apoptosis in the skin seems to occur more often than it should, which in turn leads to more inflammation and other side effects. People without lupus do not typically experience this reaction -- though too much exposure to ultraviolet light is not good for anyone.
Staying inside is not the answer -- you should all enjoy this weather. While it is difficult to avoid ultraviolet light all together, there are ways you can protect yourself. Here are some tips that I share with folks:
Avoid Mid-Day Sun
Whatever the weather, avoidance of tropical sun, or the sun in the middle of the day, is the first line of defense. This action alone may reduce the need for other treatments. Of course, avoidance of the tropical or mid-day sun may not be practical in all situations or for all people. If you must be out in the sun, broad-brimmed hats and tightly-woven, loose-fitting clothing with long sleeves and long pants are very effective.
Use Sunscreens
The use of sunscreens form the next and best-known part of sun protection. These preparations are either chemicals which absorb UV light, or pigments such as titanium dioxide or zinc oxide which scatter it. According to Dr. Andrew Franks, “right now, by far the best sunscreen on the market today is Mexoryl™, which blocks both UVA-1 & 2 rays in addition to UVB rays. There is more than one brand, so be sure the ingredient list includes Mexoryl. Products with the Helioplex® compound are close to Mexoryl in effectiveness and also protect against UVA-1 and 2 rays.”
Talk To Your Healthcare Provider or Pharmacist about Your Medications
Some medications may also increase the effects of the ultraviolet rays on a person's body. Antibiotics such as tetracycline or sulfonamides, some diuretics as well other medications have an increased potential of developing "phototoxic" reactions, such as easy sun-burning. If you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.
Avoid Other Sources of UV Light
Sources of UV light other than sunlight can also cause skin problems in lupus. Thus, photosensitivity has been reported from fluorescent tube lights, which mainly emit UVA with small amounts of UVB, and from photocopiers, which emit mainly UVA and visible light. Fluorescent tubes can be fitted with acrylic shields which eliminate UVB emission, while photocopiers should not be used with the top cover up.
Install Light Shields on Windows
Finally, because car and house windows protect just against UVB, not UVA, and clouds only a little against either one, sun protection should not be limited just to sunny days. For windows, effective UV-blocking films are commercially available.
At the Lupus Foundation of America, we want everyone to enjoy the warm months ahead, and hope you find these tips helpful. We invite you to call one of our health educators if you have any questions. You can also visit the Lupus Foundation of America’s website at lupus.org to learn more about photosensitivity and lupus.
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Dawn E. Isherwood, RN, BSN, is Health Educator for the Lupus Foundation of America. Dawn can be reached at 800-558-0121 or by filling out this contact form.
5 comments:
I live in NZ and I have lupus/epilepsy/peripheral neuropathy and it is very hard to live with. I am photosensitive to the sun, artifical light, I can't spend to much time on the computer because I pay for it the next day. What is really annoying is I have a nice complexion which makes people think that your not sick and they have no idea what is going on inside our bodies. How do you deal with this sort of disbelief?
Hi Anonymous, perhaps tell them to google it. Seeing is believing. If they see the info on the condition(s) for themselves, they'll be more inclined to be compassionate once they "understand" it. If they're not, they weren't worth your time to begin with. *hugs*
I have been living with dermatomyositis and lupus for the past 9 years. I am incredibly particular about wearing appropriate clothing, hats, sunglasses, and tons of sunscreen at all times of day all throughout the year. The worst part is I have an allergic reaction to about 90% of sunscreens. I finally found a really good sunscreen and I wear it all the time, but it seems like it's never enough. Even a short duration of time in the sun in the evening with all precautions and all my symptoms flare really bad and my skin rash gets so much worse. It makes me feel down on sunny days because I know the cost of being outside.
Hang in there lupus warriors!
I too have dealt with severe photosensitivity even prior to the initial and final diagnosis of SLE.
In mid 2005, i realized working 9+ hours a day in an office and building filled with fluorescent lighting was unbearable for me, physically. I was always fatigued, and it became a major challenge for me to get ready for work mornings. Not only that, riding the commuter express toward the early morning (8am sunshine on the sunny side of the bus) wreaked havoc on my body, too. So, I've learned to adjust my outdoor activities around the sunshine to EVENINGS! Yes, I exercise, shop, drive, play tennis, golf--all after 5PM. It's been an adjustment AND worth it! I don't usually 'share this with people' (friends, relatives, colleagues) because "they just don't get it." Thanks for this insightful article! I've been sharing it with my friends who desire a deeper understanding of WHY i'm unable to attend outdoor concerts in the middle of the day, on weekends all day in the summer, spring, or fall. I'm OK with it, because the alternative is much worse. I was in the sun (covered to the extent possible) in a hot tub at 10am for 10 minutes 3 days ago, and I'm still experiencing extreme fatigue and skin ruptures--dare i say a 'tiny flare' (if there is such a thing) All this to say:
Apply your SUNBLOCK 15 minutes before going outdoors (very important)wear long-sleeve white cotton shirts; white leggings, and I purchased a UV protective 5-inch wide-brimmed black/brown tweed-looking hat at the Hat Shoppe at Shoreline Village in Long Beach, CA. The tight WEAVE of the hat is similar to that of products designed by Eric Javits; however, I paid less than $40 for my gorgeous hat 4 years ago! It is not only versatile; but also sharply stylish--everywhere I wear it I receive compliments! Personally, I will not waste any more money on jackets or hats from Coolibar...overpriced and ineffective for ME. Lastly, I used the outdoor hot tub at my residence at 10am because: MY BODY WAS ACHING from being in the sun or something 2 days earlier. I desired some relief! Next time, I'll just sit in a warm bathtub of Epson salt and Juniper Berry oil from KNIEPP for 10 to 15 minutes instead!
HANG TOUGH WARRIORS! We can and will make it, patiently and literally ONE MOMENT AT A TIME!
Love to ALL
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