I have a very good friend who was dx with lupus about 10 years ago (or course yours truly had told her that she lupus about 15 years ago). I kept warning her to stay out of the sun and she kept telling me that she was not photosensitive. She thought that being photosensitive meant that being out in the sun caused a reaction on the skin. So she kept going to the beach thinking that she was protected by her sunscreen and her umbrella. She also kept passing out. She passed out on three different continents before she would read the articles that I had collected.
So now every year, at least once a year, I try to remind the LWL community that photosensitivity does not always involve a reaction on the skin or even an immediate systemic reaction. That does not mean that damage is not being done.
Today I am providing hyperlinks to two stories from the website of the Lupus Foundation of America and my favorite short video from Nucleus Medical Media.
Sun Rules: 5 Facts to Know About Summer Sun Safety
UV Exposure: What You Need to Know
I also adding a short list of my favorite sun protection products
Which sun protection products are your favorites? Where do you like to buy them? Do you have something really cute that we need to see in order be fierce while being safe? Share.
1. Sunguard - I love my Sunguard it protects me and saves me money
2. Last year, I finally stopped procrastinating and filled out the DMV form for my doc to sign and now my car is sunshaded all the way around.
3. Sleeves and gloves - When I leave the house I am generally wearing long sleeves that have been washed in Sunguard, my hat, my sunglasses, and I have on my sunscreen. My hands are often the only thing left exposed. I have had Flare ups caused by exposure to nothing but the skin on my hand and wrist. Now I have UV protective gloves and when needed I have
Thanks for all that great info Ann. Perfect timing!
Your insights and comments are very welcomed. Thanks for taking the time to write. It’s an important message.
Thank you Ann for posting this information. I live in San Diego where most people where sun dresses and the like. This for me is really a challenge to wear long sleeves when it is so hot. Another hurdle:) enjoy your day
Hello Ann A
I am so glad you shared this my grandsons are playing ball and i am going to some of the games they are usually late of an evening or early on saturday
Thanks Ann for the reminder and great links! I just bought some more gloves from Amazon!
I learned my lesson about 2yrs ago regarding being out in the sun too long. Now I wear UV protective hats, shirts and a face mask that covers me from my nose down to my chin, I have to wear it if I am gonna be in direct sun for more than an hour. For me the Sun is my Criptonite it makes me weak and foggy brained when this happens I have to let someone else drive for me for fear that I may have a car wreck and hurt someone. This is my third year with Lupus, I am still learning what to do and not to do, I also went gluten free and added natural anti-inflammatory foods to my diet to help reduce the chances of having flare ups. I had to go on line to order my UV clothes the name of clothing store is Coolibar.com everything in their catalog is UV protected, I plan to add new summer outfits from them this year.
Thanks for all the helpful tips! Last summer I was mostly in the hospital or stuck inside. So this will be my first summer being out more with friends. I was able to find light weight cardigans for the summer. …
Thanks Ann, for the tip on the Book, I think that I will order and read it this Summer.
I’m a newbie to everything and going through my symptoms while attaining a diagnosis, I would say how I go to the beach and never have photosensitive issues etc. in reading the attachments, I too have gotten the “lacy thigh rash” while at the beach or with similar sun exposure. This was both devastating and tremendously eye opening because I had no idea that’s what the rash was. THANK YOU for the education.
If you still want to swim Land's End makes shirts that are treated. I think they have an SPF of 50. The material is great I just wear them as t-shirts because they are so cute. I think they also make pants to wear in the water. They are not quite as expensive as Coolibar clothes.
I have had skin cancer twice and I’m diligent about sun screen and stay out of the sun,I’m very fair skinned…please be careful and read the links Ann posted…
This has been great. I never even heard of another person with what I used to call sun rash. Dots keep connecting