Lupus and the Sun: Managing Care and Protection
Lupus and The Sun:
Managing Care and Protection
June 6th- 3 PM EST
Welcome to the #LupusChat recap! In this session, the community discussed the effects of the sun and photosensitivity in Lupus. Together we explored various methods of sun care and protection as we manage our health.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and if we could bring back any fashion trend what it would be. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Hello #LupusChat friends! I’m Dr. Wei-Che Ko, Chief Resident at UMass Dermatology. I’d love to bring back fashion from the roaring 20’s, because it’s now the 2020’s!
— Wei-Che Ko (@weicheko) June 6, 2021
I’m Gretchen in Ohio. I’ve had lupus since the late 90s but diagnosed in 2011. I rescue & rehab senior dogs with medical and behavioral issues. I want high heels to get back to their roots and have men wear them again. #LupusChat
— 🤦🏼♀️ (@harveythepig) June 6, 2021
Ivey Janette,Albuquerque. Surviving lupus,lupus nephritis and god knows what else. I'd like to bring back early 80's punk and new wave fashion. #LupusChat pic.twitter.com/GctP6pTaB5
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) June 6, 2021
Hi Raquel from Texas! I love art. I would bring back that TLC look. I used to wear baggy jumpers w/a fitted tank/shirt and timberlands❤. Couldn't tell me nothing. #LupusChat
— RaquelRoschell (@raquelonpurpose) June 6, 2021
Welcome everyone! Thanks for joining us today. I’m Carly from Brooklyn. I’m a Patient Advocate and co-host of #LupusChat. I loved the Dwayne Wayne style flip glasses from the 90s! I want those back. pic.twitter.com/iAedHw72yF
— Carly by Nature (@SynceNerd_Carli) June 6, 2021
Good afternoon everyone. Christele, Lupus patient advocate and #LupusChat co-host, taking a break from her me-day to join you. Please bring back bell bottom pants, I am so ready!
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 6, 2021
Then we began with question 1.
Q1. What is photosensitivity?
A1: Photosensitivity is “photo” meaning “light” and “sensitivity” meaning a person has a bad reaction to it. ☀️💡#LupusChat
— UMass Lupus (@UMassLupus) June 6, 2021
A1 Photosensitivity means I was sick at work all week because of the heat and the sun here in Fresno Ca #lupuschat https://t.co/bzLLsKUKus
— Emma 💕 (@EmmaSledd) June 6, 2021
A1: Has your skin ever had a bad reaction like itch, redness, or blisters after getting just a little bit of sunlight? If this happens to you, I encourage you to chat with your board-certified dermatologist. #LupusChat
— Wei-Che Ko (@weicheko) June 6, 2021
A1: (continued) This can happen with various chemicals found in perfume, makeup, and creams. Foods and medicines taken by mouth can also cause photosensitivity. Autoimmune diseases like lupus and dermatomyositis can also make you sensitive to the sun. #LupusChat
— Wei-Che Ko (@weicheko) June 6, 2021
A1 Normally skin/other cells that R sufficiently damaged die through a process known apoptosis, The body then gets rid of the dead cells but in lupus, apoptosis in the skin seems 2 occur more often than it should which may in turn lead 2 more inflammation/complications#LupusChat pic.twitter.com/9wrc7bUYdN
— Caring For Lupus (@CaringForLupus) June 6, 2021
A1: SENSITIVITY, I feel like a vampire sometimes. It’s frustrating #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 6, 2021
Important information is oftentimes omitted at the time of diagnosis. For Question 2 we explored how we learned about photosensitivity.
Q2. Did a physician talk to you about photosensitivity and sun protection at the time of your diagnosis? If not, when and where did you learn about it?
A2: Yes they did. They pushed using sunscreen. Rheumatologist said to wear wide-brimmed hat during the summer.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) June 6, 2021
A2. YES! My doctors are very strict when it comes to sun protection. After EVERY appointment I have to turn down yet another bottle of sun screen. #lupuschat
— MarDontKnow (@MarTG993) June 6, 2021
A2 Miah's Rheumatologist talked to us about using sunscreen but her dermatologist was the one who explained to us what really photosensitivity is and how it was affecting her.#LupusChat
— Caring For Lupus (@CaringForLupus) June 6, 2021
A2. It was a trial by fire for me. The exposure made me sick & I was popping up with random bruises. It was AFTER discussing those things that I received that advice. I’m always in a hat, glasses, & wearing sunscreen (even on over cast days)
— PhillyzJamPoet (@theJamPoet) June 6, 2021
A2: I don’t think the topic of photosensitivity was discussed the day I was diagnosed. I remember learning about the importance of sun protection and photosensitivity from advocacy groups and searching for health information online. #LupusChat
— Tiffany (@TiffanyAndLupus) June 6, 2021
A2 sun exposure gives me fever,chills,pain ,exhaustion. 'Friends' ( who left ) always said I was making this up . After dx rheum said phot sensitivity is real. It has made me angry at how ppl treated me. #LupusChat
— staff of one (@hand_to_eye) June 6, 2021
Photosensitivity is bigger than exposure to sunlight. We explored all of what it entails in Question 3!
Q3. How does exposure to sunlight, UV rays, artificial/blue light affect our skin, and what role does it play when it comes to lupus disease activity?
I have that and it’s wonderful.
— PhillyzJamPoet (@theJamPoet) June 6, 2021
Without it, I continued to become disoriented and sick in the middle of drives or rides. The back to back car accidents finally got us to perform a root cause analysis and it was most certainly sun reaction. #LupusChat
A3: well for my skin, it literally look like I was burnt #LupusChat pic.twitter.com/PxBLrUtpoj
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 6, 2021
A3. I really wish I knew the science behind it all, but in my experience one slip up at the beach could cost you 3 days in bed. 😔 #lupuschat
— MarDontKnow (@MarTG993) June 6, 2021
A3: My colleague @Kahlenberglab showed that UV light turns on interferons in skin! Interferons are a group of immune proteins that “interfere” with viruses, but also drive lupus #LupusChathttps://t.co/kXXYbzpu1T
— UMass Lupus (@UMassLupus) June 6, 2021
Light sensitivity can vary from person to person. For Question 4, we shared and explored our experiences together as a community.
Q4. If you feel comfortable, Can you share a time when you experienced photosensitivity or a reaction as a result of not having adequate sun protection?
A4: I used to get terrible migraines in my bedroom for months and months and I finally realized that it was my fluorescent lighting causing the issues. I switched to LED bulbs immediately and the migraines stopped! #LupusChat
— Tiffany (@TiffanyAndLupus) June 6, 2021
A4. Whew. At Afropunk one year. I could feel the sun just beating down on me and started feeling dizzy and seeing black, stayed in the shade a bit. WHen I got under the sun again I felt dizzy and fell right on my butt on the grass. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 6, 2021
A4: there was a time when I was in the Sun for a long period of time and my whole left side went completely numb. My left eye started tearing, my left nostril started running, the left side of my lip was drooping, and my left leg and arm was tingly. I was TERRIFIED #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) June 6, 2021
A4 Since her diagnosis, Miah wears a hat to protect her face. But one time she forgot her hat, she didn't wear it for several hours... then a rash appeared on her scalp.
— Caring For Lupus (@CaringForLupus) June 6, 2021
That made us realize that all this time the hat wasn't protecting her face only but also her scalp#LupusChat pic.twitter.com/OuNUVxyC0o
A4. It happened last summer when I was out running errands in 100° weather. And no shade. Got disoriented. Dehydrated. In addition to chest pains. Ended up going to the hospital. #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) June 6, 2021
A4: Maybe surprising to some folks, but you can be photosensitive in the car. The windshield and window glass can let through UVA light. However, there is clear UV protective film that can be applied – no dark tinting needed! #LupusChat
— Wei-Che Ko (@weicheko) June 6, 2021
Knowledge about photosensitivity is only half the battle. In Question 5, we focused on skin protection and skin care management.
Q5. What kinds of sunscreen are available? What is the proper way to apply it, how much should we use, and how often should we reapply it?
A5: Some people swear by a two or three finger rule for figuring out how much sunscreen to use. Squeeze sunscreen in a line down 3 of your fingers. It should look like this for your face a neck & repeat til all exposed skin is covered in sunscreen. #LupusChat pic.twitter.com/YS4dBX1o5c
— Tiffany (@TiffanyAndLupus) June 6, 2021
A5. I've used Neutrogena SPF 110 when I know I'm going to be outside. It doesnt make my skin break out like Banana Boat and some of the others do. I also like to use a stick roll-on sunscreen if possible. #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) June 6, 2021
A5: Sunscreen should be reapplied every 2-3 hours. I like to carry a spray sunscreen with me so I can reapply easily on my body and face/neck, etc. #LupusChat
— Tiffany (@TiffanyAndLupus) June 6, 2021
Q5: I wear Cetaphil SPF 50 daily moisturizer on overcast days. If I know I’ll have more sun exposure, I look for sunscreens that are 75 to 100+.
— PhillyzJamPoet (@theJamPoet) June 6, 2021
I always take a cool towel with me since I usually have on hat and sleeves. #lupuschat
A5: I try to use mineral-based sunscreens for my family, to avoid endocrine disruptors for my kids, though these require reapplication every 2 hours. ⛱️#LupusChat
— UMass Lupus (@UMassLupus) June 6, 2021
Finally came our last question of the day!
Q6. What types of sun protection do you use? What are some tips that have been helpful to you?
A6: This is my sun umbrella.
— PhillyzJamPoet (@theJamPoet) June 6, 2021
I try my best to have fun and make these things as cute as possible! It doesn’t hurt that I’m always wearing some variation of purple. #LupusChat pic.twitter.com/PTBvJeNEXt
A6. Light colored clothing. Hats. Sunscreen. Stay hydrated with water or Gatorade. Also wearing my hair in an updo or ponytail to protect the scalp. #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) June 6, 2021
I use supergoop sunscreen and wear lots of hoodies. (Still looking for a wide-brimmed hat I can pull off!)
— Kate Sattler | Sweet Freeze (@katesattler) June 7, 2021
UV filters on my windows help.
My derm recommended heliocare which has reduced my flares from occasional sun exposure! 🙌 But mostly I stay home 😭 #LupusChat
A6. I try to avoid the hottest hours, and if I can’t I make sure to hydrate during and rest it off after. I really up my selfcare/rest before and after I need to be in the sun for long. And I am also looking for a cute hat and parasol to protect myself from the sun. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) June 6, 2021
A6: I also use Nuun electrolyte tablets in my water, as well as drinking coconut water in the summer to help stay hydrated and cool. That alone makes a huge difference for me in the sun and heat. #LupusChat
— 🤦🏼♀️ (@harveythepig) June 6, 2021
A huge thank you to the organizers for inviting @UMassLupus and me to this #Photosensitivity #LupusChat! Be well!
— Wei-Che Ko (@weicheko) June 6, 2021
Thank you for reviewing our recap. You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.