My light burned my face!

that is horrible, Sunny. no one should have that happen and for someone who already has medical issues to deal with its worse than horrible. i think after you've seen the doctor about it, you should email the head of the company and tell him what has happened. i dont know if the burning or hair loss has anything to do with your state of health, ask your doctor about it. 55 spf too, omg. this could and very probably has happened to others. i wonder if anyone bothers telling the company about it. most folks would probably just toss the light and forget about it. i think they need to be told. i'd also forward copies of receipts for your medical costs with regard to the burns. a short email ought to get you some action. you've nothing to lose but possibly something to gain from a quick note to them. i just went to their website and read the FAQs. you must be super careful disposing of the bulbs as they contain mercury. read it all here.

"Sunny"wrote... I finally got an Ott-Lite about a year ago. It sits on top of a shelf above my sewing machine and shines down on my head.

I'm doing a special project right now and while working on the ironing board, I pulled the lamp down to shoulder level for some really tight work. I had it there off and on all morning. By noon my face was hurting in a different way -- burning bad. I went to the bathroom and looked. OMG! I was so burned, both cheeks, my nose (yes, right where my lupus butterfly often is), my upper lip and my chin and one of my ears. Hot, burned red. Right through my spf 55 sun screen.

Ok, the lamp's history now. I'm looking for something that uses old style light bulbs. We've replaced all our bulbs in the house with the new eco friendly ones. Are they poisoning me? Maybe the light burning down on my head has contributed to my recent hair loss? Oh it makes me so mad to think that the light that's been such a boon to my sewing has perhaps been causing my lupus to flare.

If any of you have autoimmune problems or are especially sensitive to UV rays, pay attention to how you feel after using an Ott-Lite or similar light using the lovely true light bulbs.

Sunny

Back when we were band parents, a lupus person traveled with us. Her sensitivity to light made all of us vigilant about keeping her shaded at all times. We were the ones standing in the shade with an umbrella - and not one of those sissy little parasols either. So. We have known for decades that light plus lupus is brutal. Why don't we know more now? Is there a light that is not harmful for you? Would the Ott have been just fine if you'd had it at shoulder level? Would it have burned your hands instead? Questions. We need answers. Sooo sorry, Sunny. Sending gentle hugs, Polly

I have a portable Ott light that I use on an end table when I am doing hand stitching. I always have it directed to the area I am stitching and generally below my eye level so it is not near my face. After hearing this, I will be sure to keep a good distance.

I hope you get relief from this Sunny, real soon!

There was a news article recently here about compact fluorescent bulbs and UV. Health Canada is going to be testing them According to the following link some of them can give off UV but it's a problem only if you're close to them (30cm/12inches):

Allison

Oh Sunny, that is rotten. I found this info:

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.

(taken from this link)

My sis has a mil that suffers so much with lupus. She is married to an anesthesiologist and still is always chasing the pain. I hope you can work something out with the lights and that your flare goes away. (not sure if that is the right way to put it) Sending you well wishes from here. Hugs, Taria

Sunny wrote:

Thanks guys, I just wanted to complain a bit. I've known for a couple years that I can't go to Costco without two applications of sunscreen and a hat. Yes, it looks weird but I wear a hat indoors at most stores. And outdoors. And I apply sunscreen faithfully when I take my morning pills -- even before brushing my teeth, lol.

I just wonder how much added discomfort and pain we autoimmune people are going to suffer because of the change over to compact florescents. It may not be measurable, but even a little light is vicious. People don't realize. Don't understand the umbrella on a lovely summer day. But it's the real deal.

Sunny

Oh, I know whre you're coming from. One of my meds makes me photosensitive. Sun on hands and face? Big, itchy rash 8 hours later--and it lasts for days. Long sleeves, sunscreen, hat, sunglasses. I must look like the unibomber.

I have found that a little self-tanner on the hands is helpful, especially in the first foray outdoors after being cooped up much of the winter.

Luckily, the OTT light doesn't seem to trigger, but the way mine's set up, it doesn't hit my face.

Hang in there! There are enough clever people out there that I'm sure we can find something that works for you!

Monique

HI Sunny, I use my ott light all the time and fortunately have not noticed any problems from it as far as UV poison? I have an autoimmune problem that requires me to have gamagard IV every month as well as other medications. I am very photosensitive because of the meds. Like you, we too have changed all our bulbs and again fortunately to date have not noticed any problems from that either. Please check with your dr. I haven't been out in the sun for years now. Like you I would be devistated it the lighting that has been so helpful becomes a problem for your health. I too will call and talk with my own dr. to be sure I am not at risk. I am suppose to be seing her soon but I believe this is an important question to be asked before my next appointment. julia

What about those of us that can NOT be around fluorescent lighting for any length of time without getting a migraine? What are they going to do with our lights in our home? Isn't that getting a bit too private? Are they even going to have 'normal lights' available to us that can't use fluorescents?

They seem to be a bit narrow minded.that's why we have choices in the first place.

I also have a Ott lite and they do get hot. What a difference they make turning them on. I like to craft n my kitchen table and I have poor lighting for cutting. pami

Well, hot dog! Hi Pami. I was just wondering how you were . I've also noticed that John has been quietly absent. Just no telling what he might be up to. Polly

"Pami" I also have a Ott lite and they do get hot. What a difference they make turning them on. I like to craft n my kitchen table and I have poor lighting for cutting. pami

Roberta, I have the coolest umbrella every!

Sunny

I have three sets of lights in my courtroom. When we are not in session, I turn off two of them, so there is just enough for me to see my work. The first two are "cans" set into the dropped ceiling, aluminum coating on the inside to reflect the light. It is a running joke that the last bank I flip on just before we start session I call the mood lighting, a perimeter series set into the main ceiling at same level as the ventilation ducts that give excellent lighting for the bench and my workstation, but are hard on my headaches and autoimmune issues. Not all the courtrooms have the same lighting set- up, but this is my assigned one for now.....

G> What about those of us that can NOT be around fluorescent lighting for an= y

Look into LED lights as a low energy alternative to the compact fluorescents. I would be interested to hear if they also give you headaches? This year there were a lot of LED Christmas lights around. The LEDs don't have mercury in them. If they work for you, maybe we can lobby for more styles of the LEDs to be available. So far, I just have flashlights and the Christmas lights.

Jane in NE Ohio

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i recall waaaaaaay back in the early 70s when i worked under fluorescent lights 8hrs a day, i started getting migraines too often for my liking. i asked my dr about it and he said they can increase fatigue and drain the body of energy and vitamin A. that is one of the vitamins that has to do with our sight. could be if you're straining to read when you dont have a migraine already, you'll have one by end of day or soon. maybe a vitamin A suppliment would help? iirc, i started eating more carrots and other vegetables. still had some migraines but not nearly as many. they sure are debilitating. just a thot, j.

I avoid fluorescents as much as possible. I also plan my shopping so I don't go to the grocery store the same day I need to go to another store. Today, I went into Joann's.ask for help finding things so I wouldn't have to spend very much time there (Got mesh for a new tote bag that Lin is making for me, and puzzle glue), got outta there and started the grocery shopping whilst they ran the rest of the errands. Check-out time saw me waiting in the car.

Butterfly (looking at a bag of licorice...wanna share?)

We have a DSIL who loves licorice - in the form of black jelly beans. They used to be easy to find at holidays, especially Halloween - but no more. I have a great source if you need one. Polly

"Butterflywings" (looking at a bag of licorice...wanna share?)