Sun Sensitivity and Lupus
My wife has had a rough time this summer for a number of reasons, but I know that one of the contributing factors was sun exposure. I was wondering how some other lupus patients deal with sun sensitivity? My wife is not only extremely sun sensitive, but she is also very sensitive to some artificial light sources, like the kind that are found in large department stores or office buildings.
According to the Arthritis Pain Cure Center,
Scientists think that ultraviolet light (which is in sunlight, fluorescent lights, photocopiers, and VDUs) create antigens (protein molecules) on the skin surface which react with antibodies. The antibodies cause white blood cells to be drawn to the skin and attack it and a rash appears. The redness and inflammation may also be due to excessive nitric oxide present in the skin after lupus patients are exposed to sun. In lupus, sun is more likely to cause problems than artificial sources of light.
The UV rays in sunlight causes damage to the skin (keratinocytes), resulting in sunburn. In normal people, the sunburn goes away because the dead skin cells get cleared away quickly. In lupus, sun causes the damage to skin cells but the cells are not cleared away very well. The releases of the contents of the cells cause inflammation. In addition, the cell contents, which include Ro, are able to cause an immune response. The immune system responds to the cells by creating autoantibodies which attack the skin.
We have talked about tinting the windows in our car, but it is somewhat expensive, and we have been told that some tinting may be illegal. We have purchased some clothing that is extremely UV resistant, but it doesn’t get worn often because, well, it’s not very pretty. I swear someday that we are going to have a vacation where we sleep during the day and go out at night.
Jeff, I appreciate your finding and sharing the information on how, exactly, UV exposure can induce a lupus flare. I’ve known about it, but never could quite explain it to others.
Like your wife, I try to dress defensively. In the sun I wear a broad-brimmed hat that has a high UV-protection factor. San Diego Hat Company has some cute paper braid ones. I also use a Cakoon UV umbrella. Who wants to layer up on a hot day? It’s definitely more comfortable and cooler than long sleeves. Of course I always use sunscreen too. Neutrogena has some new ones for the face and body, with high UVA protection, that don’t irritate my skin.
We’ve joked about the vacation conundrum too. Usually you go on vacation seeking the sun. My husband thinks someone should start a lupus-oriented travel agency that specializes in cave tours.
We just got back from a trip to a cooler, cloudier climate and loved it (we live in high, sunny desert). I was worried about the stress of travel, but found the new surroundings and respite from the sun to be very energizing. A highlight was a Segway tour of a major city (okay, it was Paris) by night. Talk about lupus-friendly — we toured for hours with no walking and no sun exposure. Many cities in the US (over 100) and abroad now offer Segway tours.
My husband’s been looking into window tinting too and, like you, we were put off by the price. Suction-cup mounted baby-protection shades in the car window might be a cheap alternative — ?
Best wishes,
Wendy
I, too, am extremely photo-sensitive. During the summer I do wear the UV clothing. Coolibar has come out with some pretty tops. Travel-Smith and Land’s End have less expensive UV clothes than Sun-Precautions. You would be suprised at how cool they are in the summer.
Neutrogena sun screens and I are inseparable all year long. As far as window tinting is concerned, I tinted mine. It’s a small price to pay considering the alternative. Also, it is not illegal if you have a note from your doctor “prescribing” tinted windows because of your condition. It has to be written on a prescription pad and carried with your driver’s license.
My husband and I started taking winter vacations. They have worked out nice for us but our children are grown. It might not be so easy for a family to do that when they have kids in school. It seems when a partner has a chronic illness you need to find different ways to adjust and keep on living life. Sometimes it’s hard but we can’t just give up.
God bless,
Joyce
This is a big topic of conversation at our house recently. We want to go back to Burning Man which is ‘up all night’ and would work well for me except that in the past we have camped there in tents that did not offer total UV protection. (Burning Man is in the desert) So right now we are trying to figure out if we can build a geo-dome that will offer enough sun protection or we are talking about traveling in a RV. We’d like to figure out the dome option since even though it is expensive at least then it would be ours. Plus we would like something that we could set up a reasonable seating area so people would join me. A RV though would work for sure even if it is not as social.
I’m also currently researching what can be done with the car windows and I’m ready to cough up the cash. Most of my sun exposure occurs in the car and I still have issues even with my sunscreen and sun protective clothing on. I think it might be a wise investment.
Most of our vacations the last couple years have been in hotels. The kiddos like the water parks and we have a couple conventions we enjoy.
I was never a big lover of the sun, but when you really can’t have hardly any it is a trial. The vacation/social issue has been very wearing on me.
Hallo,
ich kann deine Meinung nur unterstreichen.
Meine Tochter ist auch sehr extrem auf Sonne Lichröhren und BMW Autoscheinwerferlicht empfindlich.
Im Krankenhaus bekommt sie von uns immer eine Tischlampe mit damit man die Deckenbeleuchtung nicht anmachen muss.
Sie trägt auch eine Sonnenbrille wenn das Licht zu grell ist.
Bekleidung immer lange Baumwolle und Hosen sind ja auch noch praktisch.
Und es kann ja nie warm genug sein so ist ein langer Pullover aus Baumwolle immer gut.
Schau mal in mein Forum:
http://www.razyboard.com/system/morethread-weste-handschuhe-decke-uvm-sommer-winterzeit-marsden-795942-5614758-0.html
Liebe grüsse an deine Frau.
LG Gisi
Gisi,
Jenny has the same trouble in the doctor’s office. We usually just turn the light off and leave the door open so we are not totally in the dark. I hadn’t thought of bringing a lamp.
Hey there. I’m involved with a girl who is dealing with these issues, and just looking into things.
I thought I would mention, while you can find places ranging from $100 – $250 for window tinting, you can buy the supplies to do it for about $20-$30 dollars or so. There are instructions available on the web if you search around. I’ve done it myself, and while it’s a little involved, it’s worth saving a few days in pay, and not all that difficult to do.
Best,
MJ.