Oh when the light….comes shining in…..

….I get a rash and feel, likely, the complete OPPOSITE of warm and fuzzy and squishy inside……
Today’s tidbit of information stems from the beautiful sunshine I see outside of my living room windows…..brilliant….warm….and really quite “toxic”.
“Photosensitivity”
Did you know that 1/2 to 3/4 of people with SLE are afflicted by photosensitivity?
The sun can cause new lesions. In people who suffer from either of the cutaneous lupus diseases…I can’t even fathom how horrible that would be!!
Me? Well, lemme direct you back to day one. The “photo”. The “photo” that I’ve never, ever, ever, ever, EVER wanted anyone to EVER see.
Sun exposure worsens the malar rash that I have. And that’s just on my face. Sun exposure, for me…means that if I haven’t lubed myself up with sunscreen with an SPF factor of eleventy-billion….well…..it ain’t pretty. :o( It’s really rather horrible, actually, and does NOTHING to help my already fragile esteem *sigh*
The sun can also trigger “flares” in those suffering from internal lupus (such as myself)….remember, a flare can be different from one person to the next AND be different in each person for each flare!!
Oh, but WAIT! There’s MORE!!!
I’ve only mention sunlight. What other forms of lighting have measurable amounts of UV light?
Yup. Florescent lighting.
Workplaces.
Shopping malls (say it ain’t soooooooooooooo!!!!!).
Grocery stores.
Blech!!
So why such prevalence of photosensitivity in people with Lupus?
Well, theories do seem to resonate with possible understanding….I’ve taken the following clip from the Lupus Foundation of America (yes, I’m Canadian, no, our website didn’t have it written…yes, I should probably write to them!!):

“How does a lupus rash develop after sun exposure?

A current theory, based on experimental evidence, is that UV light causes skin cells to express particular proteins on their surface. These proteins, including one called “Ro,” may then be the targets of antibodies which latch on to them. The attached antibodies are thought to attract white blood cells which attack the skin cells, leading to the inflammation that causes the rash.

Normally, skin (and other) cells that are sufficiently damaged die through a process known as programmed cell death, or “apoptosis.” The body then gets rid of the dead cells. But in lupus, apoptosis in the skin seems to occur more often than it should, which may in turn lead to more inflammation.

Another contributor to the lupus rash may be that too much of the inflammation-promoting substancenitric oxideis made in lupus skin after sun exposure. This then leads to further redness and inflammation.

The reasons for these abnormal reactions (beyond a genetic tendency to them) are unknown, but many potentially exciting research studies are ongoing in this field.”

****many potentially exciting research studies are ongoing……****
PLEASE….if you have ANY coffee dollars you might be able to donate…this is SO very important to me AND my family. It’s for advocacy, for research…for websites and forums so that education about lupus and treatments is continually accessible….
I’m walking because there are so many who suffer from SLE who, because of the internal organ damage and flares and pain, oh my!….cannot walk.
I’m walking for them.
I’m walking for my children.
I’m walking for those who believe in me.
I’m walking for me.
Because…to date…I still can. :o)
I am doing my part….I am taking my medication properly. I am making all of my doctor appointments (Dude, I’ve got five kids, a part-time job, a household to manage, an illness to research, a syndrome to Google….and a partridge in a frakkin’ tree….seriously…no small feat!) I am monitoring my blood sugars. I am continuing my efforts to educate and spread awareness, even when my hands hurt or my body wants to cave. I have a better understanding of my nutritional requirements. I have now been smoke free for 3 weeks, 4 days!!
Please meet me halfway? There are only a few weeks until Walk Day!! :o)

6 responses to “Oh when the light….comes shining in…..

  1. We Geocache at night then my love. Out of the way of the nasty bright star in the sky, yet under the beautiful, billion light year away stars that we love to sit under.

  2. I find if I gradually have sunlight exposure in the spring, rather than doing a marathon gardening session the first time I had a sun reaction, it seems to be a little better. Of course sun block of SPF 50 million must also be worn. 🙂 Mike and I are going to support you on the walk just have to get our pennies together. Not sure if I could do the walk right now though as my left foot is giving me issues.

  3. I find I must also gradually introduce the sun. I try my best to stay out of direct light/midday sun…however, with my younglings, plus the daycare girls…the summer is VERY difficult, and that is when we do the most activity!!

    I will walk for you. :o)

  4. Question: Do you apply an SPF moisturizer under your make-up?

    This is very interesting. I knew about the skin lesions but didn't realize how much they would be affected by sunlight. 🙁

    This also explains all the times you say "no" when I invite you to outdoorsy things.

  5. I do not use moisturizers that contain SPF. They contain chemicals/additives that aggravate my already hyper-reactive malar rash and secondary rosacea.

    I wear BareMinerals from Bare Escentuals…mineral makeup contains light-reflecting pigment and is a "natural" SPF…meaning no added chemicals or additives.

    Sunlight is only one…the florescent aggravates just as much :o(

    And yes…I must pick and choose what I do for this reason as well ;o) It gets tiresome sometimes always feeling like I'm declining EVERYthing…but, sometimes I can do it, other times I just KNOW it will aggravate it if I am in a flare…

  6. Yes I remember you talking about your sensitivity to chemicals.

    I think I will find you a beautiful big floppy hat for this summer's fest season… You would look FAAABulous!

    A big enough brim to shade your lovely face. 🙂

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