Comments on: Sun Sensitivity and Lupus

By: Gale

Gale — Thu, 21 Oct 2010 09:38:04 +0000

Thanks Jeff hope you and Jenny are good. I love the courage to turn off the doctor’s lights. I had red blood cells crash and had to have three pint transfusion. All day in hospital my rash was the best I have ever had. I went to get my mom at airport – security keep watching me – looked like I had small poxs and hair falling out. I guess I was a little scary. They should have seen me without makeup and long sleeves if they wanted go show.
Does anyone have a connection to vasculitis rust look on legs and uv lights? Or just bad plateletts. I t looks like blood leakage with brusing that looks like weed wacker rock hits in shorts. No I don’t weed wack anymore. Thanks

By: Gale

Gale — Thu, 21 Oct 2010 09:24:12 +0000

I am so comforted by reading the other stories of UV issues. Tint your car windows and still wear sun protection. The sun rash on the left side of my face is almost gone. I found Neutrogena Age Shield & repair this summer I have separate tubes all over the place. I even went from Alaska to Texas & New Mexico in July with no rash. I used this and took all normal protection and had a successful trip. Yeah Look for great hats and find ones with dark underbrim so there is not any reflection on your face or around glasses. Have a hat and long sleeve sun shirt in every auto and cover up. I tinted my own windows with son’s extra help hands. Put packing tape on the window felt to not get dust sucked up into the bottom of window film. I learned later how to do that part Oh well. Protect yourself so you can live stronger & healthier. Still having platlett issues worried about Cellcept turning down plateletts too far- Any ideas? I have eaten my weight in brussel sprouts & brocilli & egg yolks in last year. Does Vit K2 help anyone? Vit K1?

By: Jim

Jim — Tue, 10 Aug 2010 01:41:17 +0000

Hi all… My wife is extremely sun sensitive. We are pretty sure she has lupus, even though the labs don’t seem to support it (yet). We have tinted all the windows in our vehicle, which has had a TREMENDOUS result for my wife, and I would highly recommend it for anyone dealing with sun sensitivity. Get the tint that has 99% UVA/UVB protection. Since they have (nearly) clear tint that meets that criteria, we even tinted the windshield, which is the main culprit of sun exposure. Our issues are how to deal with traveling – almost all hotels anymore, as well as cruise ships, have fluorescent lighting. We have brought our own light bulbs in the past, but not sure how that would work on a ship. We did find a natural plant that has some great anti-reactionary properties to the sun – polypodium leucotomos extract (PLE). You can buy it in the states, but if you buy it overseas, you get about twice as much for the same price (supersmart.com – oral capsules or skinactives.com for the kind you can add to skin cream). It has been very challenging to deal with since we need the sun to live. I wish everyone well, and thanks for the above info regarding the additional clothing – we already shop from coolibar.com… Jim

By: Michael

Michael — Fri, 28 May 2010 01:07:26 +0000

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.

By: Jeff

Jeff — Sat, 27 Mar 2010 17:23:03 +0000

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.

By: Gisi

Gisi — Mon, 22 Mar 2010 21:50:21 +0000

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

By: Heather

Heather — Tue, 16 Mar 2010 04:38:25 +0000

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.

By: Joyce

Joyce — Tue, 23 Oct 2007 15:50:46 +0000

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

By: Wendy

Wendy — Sat, 01 Sep 2007 16:23:20 +0000

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