Please Protect Yourself from the Sun

Many People with Lupus are Photosensitive (The Lupus Foundation of America says two-thirds of people with lupus have increased sensitivity to UV) - photosensitivity often does not become an issue until summer. This is because during the summer the UV rays - the portion of light to which we are sensitive - strike the earth more directly.

Exposure to the strong UV rays that come from the summer sun (along with the heat) can cause flares for people with DLE and SLE. UV exposure can increase skin response in diverse types of lupus. It can also lead to fatigue and joint pain. According to the About.come discussion repeated exposure to UV by people who are photosensitive and lead to cancer.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2253&zoneid=527

http://lupus.about.com/od/signsandsymptoms/p/Photosensitive.htm

Please protect yourself. If you do not protect yourself from the sun you will increase your chance of having a flare. If you are already in a flare you will increase the severity of the flare. Please Protect Yourself.

Nicely said Ann,

Everyone please take notice of what Ann's said as she's thinking for the very best of member's and does'nt want to see anyone or hear that a member as took ill with the heat your having.

Doing the best I can, but my job sometimes requires me to be out in it. Until another job breaks at least. My boss is aware and tries to do the best he can, but is limited because of the quotas on road time for my position. Thanks for the reminder, I'm a bit scared of what could happen.

This is so important! I am still learning the ropes of SLE and I haven’t learned until lately just how sensitive I am! My whole life I have shied away from the sun and heat anyway-I love the cooler (not cold) weather. A few years ago I had a job that kept me in the sun a LOT. At that time, I didn’t know I had lupus. During that year, I hurt so badly and ended up with appendicitis.
This year, I have spent much more time in the sun than I should, and now I have Chronic Gallbladder disease.
I’m not 100% sure that the sun was the cause, but I am the first in my family to have gallbladder and appendix issues as well as the first to have Lupus.
I am currently researching UV Protective clothing. I just hope I can find some things I won’t roast in…

Thank you for posting these articles!

Hello greensurfer,

Some jobs we can't avoid where member's are outside like yourself and it's really good of your boss the way he helps the best he can do....the only thing to much heat can course is a flare to break out and alot of flares can be irritating to the skin.

All my love Terri xxx

greensurfer said:

Doing the best I can, but my job sometimes requires me to be out in it. Until another job breaks at least. My boss is aware and tries to do the best he can, but is limited because of the quotas on road time for my position. Thanks for the reminder, I'm a bit scared of what could happen.

Hi SweetNovember,

Lupus can cause Gall bladder issues...not sure about appendicitis though but being out in the sun with Lupus won't cause these issues as it's internal but it will go made with your skin and can course a good flare. xxx

SweetNovember said:

This is so important! I am still learning the ropes of SLE and I haven't learned until lately just how sensitive I am! My whole life I have shied away from the sun and heat anyway-I love the cooler (not cold) weather. A few years ago I had a job that kept me in the sun a LOT. At that time, I didn't know I had lupus. During that year, I hurt so badly and ended up with appendicitis.
This year, I have spent much more time in the sun than I should, and now I have Chronic Gallbladder disease.
I'm not 100% sure that the sun was the cause, but I am the first in my family to have gallbladder and appendix issues as well as the first to have Lupus.
I am currently researching UV Protective clothing. I just hope I can find some things I won't roast in...

Thank you for posting these articles!

Hi Ann,

Thanks for the extra info on letting we know that the UV rays can cause internal organ damage from the SLE....that's info i'd not read somewhere along the line or told but at least we all know now to really watch our bodies with the heat and rays.

Love Terri xxx

I apologize for continuously pointing towards these "spritz bottles" for the heat, but for those who live in extreme climates - like Texas, Arizona, Nevada, etc... the heat (even in the shade) can also cause flares. In addition to those items that Ann A. has mentioned - it helps greatly to carry a "spritz bottle" of water to not only prevent flares from the heat, but also sun stroke and heat exhaustion. This is recommended not only by doctors in Texas, but spoken of on the news along with those items that Ann A. has mentioned.

Ann A. said:

Sunscreen, sunblock, hats, sunprotective clothing. If sunprotective clothing is impossible - long sleeves and long pants are better than short sleeves and shorts. Every little bit helps.

When I was younger I actually spent summer in Virginia working on archeological digs. I couldn't keep myself out of the sun, so I learned how to keep the sun off of me. I will admit that sometimes I looked funny. But 30 years later people recognize my sun protective gear as "my style." To me the important thing is that I am still here 45 years after my dx to experience what it feel like to no longer have to work in the sun. Now, during this heatwave I mostly stay inside. When I go out it is from one air conditioned place to another wearing sunscreen and a hat. Take care of yourself so that you may live long and prosper or if you prefer survive and succeed.



greensurfer said:

Doing the best I can, but my job sometimes requires me to be out in it. Until another job breaks at least. My boss is aware and tries to do the best he can, but is limited because of the quotas on road time for my position. Thanks for the reminder, I'm a bit scared of what could happen.

Hi...

I got some great UV protectent clothing but...for the life of me I can not find my booklet...I am still looking, they even have packets (you incert in wash machince) that can make your own clothing UV protectent. So I would just put that in on the internet and see what you come up with ...while I still search for my book...LOL

Hope this helps...

Bern

Hi Bern,

sunshine's on a trial for medication and she's not long done a thread on the stuff you add in the wash to give you protection on your clothing.

Love Terri xxx

Hi Bern,

Just found the thread link for sunshine and what you put in the wash.

http://www.lifewithlupus.org/forum/topics/everyone-check-this-out-plz-it-will-change-your-life

bern said:

Hi...

I got some great UV protectent clothing but...for the life of me I can not find my booklet...I am still looking, they even have packets (you incert in wash machince) that can make your own clothing UV protectent. So I would just put that in on the internet and see what you come up with ...while I still search for my book...LOL

Hope this helps...

Bern

Ann - you are correct here. I didn't start wearing sunscreen early enough and went to sit outside in the shade a few times per day. It wasn't as hot as it is right now, but it was warm and the sun was definitely out. After just a few times doing this, I came inside to notice that I had tan lines!!! Right where my flip flops are and where my crop pants end as well as my T-Shirt. We call it a "Farmer's Tan" here. I did not once step into the sun! I now where sunscreen no matter rain or shine, shade or sunlight, winter or summer! :)

Thanks for all of this great information Ann A.! You are truly a wonderful researcher!!

Draginfli

Ann A. said:

Staying out of direct sunlight may not provide as much protection as people think. UV rays can make their way into the shade -
http://www.cnn.com/TECH/science/9807/14/shade1.enn/
It is UV rays from the sun that interact with the 7 dehydrocholesterol in skin to produce vitamin D (Specifically UVB). It is this same part of the light spectrum to which people with lupus are sensitive. If you are receiving enough "diffuse" ultraviolet to tan, then you may be receiving enough ultraviolet to produce a photosensitive reactions. And please do not rely on cloud cover for protection. Those damaging UV rays penetrate clouds, they penetrate beach umbrellas, they penetrate weak sunscreen.

http://www.skincancer.org/prevention/sun-protection/shade

Bravo! It is very helpful information! :)

Thank you!

Ann A. said:

Thanks Draginfli,

I have survived this lupus for at least 45 years. I have lived in some places where it gets pretty hot and pretty sunny and pretty dry in the summer time - Arizona (south of Tucson) right on the border with Sonora, Mexico. I have also lived in places where it is sunny and hot but you never feel dry because of the humidity New Orleans, Mobile, and now the Richmond, VA metro area. For me it was learn or give up the work that I loved, so I learned.

And right now I spend most of my time sitting at this computer reading (eyes are too bad to read the print in books) and writing about vitamin D. So, I spend a lot of time reading about sunlight. Doesn't take much effort for me to share.

I am old and I worry about young people getting sicker and not understanding why. I have no idea how the size of the font changed - I have been trying make the fonts larger all day.

The most important book that I ever read about lupus was Henrietta Aladjem’s 1976 The Sun is My Enemy: One Woman's Victory over Mysterious and Dreaded Disease. I read each of the subsequent books that she wrote about lupus. In 1985 when Aladjem was decorated by President Reagan in for her work helping patients and physicians understand lupus, I stood up and cheered. I knew that if I had not treated the sun as my enemy, I would have died. Her work gave me the courage to protect myself from the sun when friends and family members made fun of my efforts. So, I am just trying to pass it forward.

Oh yes that is so true!!!! And it really hurt's so bad , it leaves red marks on my skin. Staying out of the sun helps alot also.When i have to go out , i put on a long sleveed shirt and that helps sometimes. I live in Georgia, and it has been so hot for the last couple of weeks - really hot !!!! Am staying in the house as much as possible....You are right stay coverd up as much as posible if you have to go out ...Beverly L.

Hello Ladies,

I hope your all keeping well and protected like Ann's mentioned.

If you want coolness move to the UK as our summers don't seem to exist anymore...just bad winds and rain, so depressing and cold...i hate it and need abit of warmth in the air especially in the home for my raynauds, i'm still wearing thermal vests and fleece jackets.

"What a life for we all" xxx

Is there an acceptable level of sun exposure? I am trying to figure out how restrictive I need to be with a 14 year old photosensitive son who hates sunscreen or the feeling of anything on his skin. Does he needs to wear sunscreen indoors at school and in the dance studio, if there are fluorescent lights, for instance?

Even in ten minutes, the sun can become damaging. I use sunscreen on my face if anything because it is very sensitive. Last summer, my face was dark brown from just a little sun.
Maybe try spray on sunscreen for your son. As far as the lighting, there shouldn’t be any UV rays so I am guessing he will be fine under them. I don’t know that for sure but I have never had an issue with indoor lighting. I actually used to go to tanning beds and as long as I wasn’t in there too long, I never had issues.