A number of years ago I received the following email. "Hi, my name is Bonnie and I have lupus. I love to fish but am highly sun sensitive. I've not been able to fish for 5 years." Being a fellow fisherperson, Bonnie's email tugged at my heart. And, to my sadness, I found that she was not alone. Many people with lupus were coping with the problem of sun sensitivity by never going out in the sun.
When is the last time you played golf, watched the kids' soccer game or puttered outside in the garden? Called by some the "great escape," the outdoors offers mental and physical treasures far too important to be neglected.
40% to 70% of lupus patients will have photosensitivity. Excess sun exposure can cause flares in people who have systemic lupus and aggravate cutaneous lupus. Exactly how UV light aggravates lupus is unknown. But according to San Diego dermatologist Dr. Leslie Mark, "People with lupus should not deprive themselves of the great outdoors; they just need to cover up."
Outfoxing the Sun
Photosensitivity is a serious problem, especially for those with lupus. But with the proper know-how those with lupus can lead a normal outdoor life. It is almost like playing a game ... a high stakes game where the stake is your outdoor enjoyment. Your opponent (The Sun) is warm-hearted but wily and potentially dangerous. To win you need to come to the game educated, well prepared and dressed to win.
Knowing your opponent.
The Sun shines a spectrum of radiation. For our purposes we will concentrate on the UVA (ultraviolet A) and UVB (ultraviolet B) rays, both problems for those with lupus. It is important to understand two basic characteristics about the radiation you're up against because the strategies of winning are different. UVB is significantly stronger in the summer and between the hours of 10:00 am to 3:00 p.m. UVA, on the other hand, stays at the same intensity all day long and throughout the year.
Strategy : You must stay on guard all day, every day and for all four seasons. Planning activities in the morning or late afternoon will increase your odds for success
Being sun-safe is a contact game so you'll need full body protection before going out. Let's start at the top. Cutaneous lupus of the scalp and face is very common, even for those with thick hair, so sunscreen and a sun hat are both essential.
San Diego rheumatologist Dr. Katherine Nguyen recommends three simple guidelines to her lupus patients when choosing a sunscreen. Look for a sunscreen that is hypoallergenic, has broad spectrum protection, and has an SPF of 30 or greater. As a safety precaution she suggests first testing the product on a small area of the skin to rule out skin sensitivity or allergy.
As you may know, the term broad spectrum sunscreens refers to both UVA and UVB rays being blocked. What you might not know is that SPF (Sun Protection Factor) only measures UVB protection. Labeling laws regarding UVA protection are currently being defined by the FDA. One way to check if UVA is being blocked is to read the ingredient panel and see if ingredients such as Zinc oxide, Titanium dioxide and Parsol 1789 are included.
Getting the most from your sunscreen.
Apply enough. Most people apply sunscreen like moisturizer which equates to about half the SPF rating you seen on the bottle. Example: SPF 30 lotion applied like moisturizer would afford only SPF 15 protection. Rule of Thumb: 1 tsp. for an adult face and neck (1/2 tsp. for a child).
Apply sunscreen 20 to 30 minutes before leaving the house. Most health experts recommend reapplying sunscreens every 2 or 3 hours, or more if active or swimming. However a recent study suggests that reapplying 20 minutes after stepping outside, instead of waiting 2 hours, can reduce your UV exposure by as much a 40 percent.
Heat may change the chemical composition of sunscreens. So don't store in the car and other places where temperatures may get high.
Strategy : Apply enough sunscreen and take it with you for re-application
The next layer of protection is a sun hat. A four inch brim or greater is recommended for maximum protection. Sun hats with a downward slanting brim will go far in protecting your face as the sun approaches either horizon . For additional protection on the face and neck and/or for those who can't wear sunblocks, a hat with a drape that extends across the face or a scarf used as a mask, may be a good answer.We also have an amazing Solar Face Shield that provides excellent face protection.
Now for the body. As with the face, sunscreens/sunblocks are an option for your body. But for many, clothing is a better option. With clothing, you're not putting chemicals directly on the skin. Plus, the protection won't wash, sweat or rub off during the day. Anything you put between you and the sun will help block the sun's rays. The question is, "How much?". Rules of thumb for everyday clothing is the thicker, the darker and the tighter the weave, the better. The type of fabric also makes a difference. Of all the fibers, cotton is the least UV protective. The average T-shirt blocks only 50% of the ultraviolet light and when wet that protection dramatically drops. Lycra and polyester have the most UV blocking ability with nylon somewhere in the middle.
Special sun protective garments are available commercially. The main difference between these outfits and everyday clothing is that sun protective garments have been rated by an independent laboratory for their sun blocking ability and then given a UPF (Ultraviolet Protection Factor) rating.
Most sun protective fabrics are tightly woven/knit and may (or may not) be chemically treated with UV inhibitors. Fabrics from cotton to polyester are used, with the most common being nylon.
Also unique to sun protective clothing are special design features to increase sun protection and help keep the wearer comfortable on a hot day. Such features may include air vents, a roll-up collar for added neck protection or cuffs with retractable hand flaps. Sun protective clothing also provides protection when damp. By wetting your shirt or hat you can stay fresher with evaporative cooling - a big advantage on a hot day.
Will the strategies work?
Well, there are no guarantees. But remember our friend Bonnie? I wanted to tell you the happy ending to her story earlier but decided to save the best for last. Here is Bonnie's next email: "I was finally able to go fishing! It was wonderful. I went with my brother and husband. Between the three of us we caught 13 fish. All were about 2.5 to 3 pounds. I couldn't have dreamed of a better outing. My sun protective gearworked wonderful. I've not had any ill effects from being out in the sun for 5 hours. I could never have been able to stay out that long without my new clothes...
P.S. I caught the biggest one. My husband caught more, but I caught the biggest!
Needless to say I keep her email in my daytimer. It always brightens my day.
We included the side bar below with the article.
- Beware of the sneak attack! The sun can play unfair when you least expect it. Don't be deceived by a cloudy or overcast day. As much as 80% of the sun's harmful rays can penetrate this facade.
- Sand, cement and snow can reflect as much a 80% of the sun's original light.
- Window glass is also deceptive. Although UVB is blocked by glass, UVA is coming through with full vigor.
- Remember the sun is always moving. You may be in the shade one minute and in the full sun the next.
- Medications can add to your sun sensitivity or make you sun sensitive when you were not in the past.
- The sun's intensity increases 4-5% with every 1000 feet of elevation.
- Remember fluorescent light, often used at home and in offices, emits a low dose of UV light. Those of you highly sensitive to UV radiation, may need to take the precautions discussed above even though you are indoors.
Strategy Keep a scarf or sunscreen with you at all times for unplanned exposures. Having a sun umbrella is also a quick and handy tool for unexpected exposures.
Wearing a physical face shield like a scarf and spending less time in the sun may be necessary on some occasions like when you are closer to the equator or at higher altitudes.
This material is provided for information only. It is not a substitute for your doctor or health care provider. If you have any health questions or concerns you should see your doctor or health care provider