Living With Discoid Lupus

TIMESTAMPS
- Why making this video: 1:18
- Diagnosis: 1:56
- What is Discoid Lupus? 3:46
- Treatment: 5:30
- Tips & Prevention: 7:14



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⌲ Music

[ChapterStackss]

I hope you all are able to stay home and safe! 💕 Like most people, I’m going to be spending a lot more time at home, so if there are any videos you would like me to film, feel free to let me know!

[zx-lixf]

Thank you for sharing your story it's really nice to know that someone out there in the world is in the same situation!! :) I'm 19 and 2 months ago I was diagnosed with DLE. The hardest part is that you have to get rid of stress and anxiety. But I think that I have done a really good job in achieving that until today because I don't want to destroy my own health because of something so stupid. In my case I almost lost my 2 eyebrows and I also had red marks in me hands and in my ears. Right now after 2 months of medication my marks are gone and my eyebrows are growning up. (my doctor thought that because i had it for 3 months they wouldn't but they did 😁) I actually don't mind wearing hats anymore they became part of my style!🤣 If you have DLE and it's pretty new to you, do not worry, you are not alone we are together in this and we will overcome this together! We just have to believe in ourselves!🥰❤️

[Sabin]

Thank you for making this. I don’t have a diagnosis yet, but I’m in physician assistant school and I’m fairly confident that this is what’s been plaguing me for the past 10 years.

Mine flares with stress, but I went to Puerto Rico and my scalp hasn’t been the same ever since. Major tip off.

Yours looks very similar to mine, which looks totally way less extreme from the textbook pics.

[RosaliaEstevez]

I was recently diagnosed with Discoid Lupus, and the thing is I find it hard avoiding direct sun exposure because I live in a tropical country and sun hits hard every day of the year.

[mkearse]

Thank you for this video! I was diagnosed today finally after having a lesion on my nose for some time. I was a little scared while talking to my doctor about it and this video made me feel a little better! Thank you!!

[tracyferguson]

Thank you for sharing. I was diagnosed today and am glad I found your video. Really helpful.

[jhvkdcb]

I have Discoid Lupus too, got diagnosed this year. I was very anxious about this. Thank you for sharing.

[rachelpayne]

So many derms have no idea! Thank you for posting this. Age 30 My bloodwork kept coming back borderline after getting “weird acne” on my face. They thought I had lupus, just not sure. Refused to biopsy any lesions for confirmation due to “fear of scarring”?!? 👋 this will scar me regardless but ok….5 years later I’m still dealing w/ diagnosis affirmation from my derm for DLE, but they did put me on low dose Accutane 2 months ago to see what would happen and wow - it was Only one very small lesion still standing after 2 months, of around 7 originally that normally took around 6 weeks to heal each. And no new lesions! On 12/13 however, ipledge REMS system for Accutane failed and have no idea when I can get my RX again. Been off the tane’ over a week now and already regressing but holy moly Wear your sunscreen DLE people! Radiation sunlight is a Major trigger

[StudioLindsay]

Thank you for sharing your story! I had never heard of discoid lupus before. Glad you’re doing okay!

[jessblaikie]

This was great and I learnt heaps. You're always so articulate. I got diagnosed with systemic lupus when I was about 21. I can now get and keep myself in remission with no prescribed medication. It is manageable. My specialist who diagnosed me, actually told me not to google it, so I completely related to your comment. I had a colleague look it up and ask me if I had a ten year life expectancy!!!

[jamieobrien]

I was diagnosed with DLE in 2003 and my experience is doctors seem to believe it’s only a skin problem but I truly believe there’s more to it than that. Certainly not as bad as SLE but definitely more than just skin lesions and sadly no one seems interested in doing any trials or anything research beyond the lesions. Even Lupus organizations don’t seem to care as much about us DLE sufferers. All they tell you is to pop some Plaquenil, cover up and wear sunscreen. Keep tabs on more than just your skin.

[bparker]

Thank you. You have explained discoid lupus perfectly. Seen many videos, yours is the best.

[sorryitsjenny]

you should do an everyday makeup routine, I always love the way your make up looks

[homemakerhighlights]

Thank you!! I went to the derm today expecting to be diagnosed with Psoriatic Arthritis per my GP. 2 hole punches, 1 skin scrape, and stitches on my leg later... They think I have Subacute cutaneous lupus. It made me so nervous to hear. I had blood work last month so I'm very fortunate no systemic Lupus. Thank you for sharing your experience. This makes me feel so much better.

[isray]

Definitely appreciate this - I was just diagnosed (started during lockdowns so didn't get in for a long time)

Awkward to be male and trying to find info on this and Sjogren's (DX was both), but I know what I'm going to ask my in-laws for next time they go back to Japan!

[alandapetes]

Thank you for this video I have been diagnosed with the same thing and my hair is having issues and I have tons of scars all over my face and arms and neck

[MariaRivera-prot]

I’m so glad I came across your video I first noticed a lesion below my lip on the face and when I saw the dermatologist he told me I had a skin condition call pitaryosis rocea said it would disappear in 8-12 was it’s been over 5 yrs . I went back this year and the same doctor told me discoid lupus has never done labs or a biopsy. I think it’s time for a 3rd opinion 😢

[finalomega]

I was told ringworm at my physician too! Then I went to a dermatologist today and they think it’s this, but my skin sample is being tested.

[bunnyjanie]

Sunscreen is so important ! I always forget to reapply during the winter but I try my hardest . Thanks for sharing your story, I learned something new today. Stay safe everyone! ❤️

[kimberlymoore]

I have a huge discoid lupus on my head and now my nose