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Living with Lupus

LupusCorner Community: What’s New & Noteworthy

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Here is a quick roundup from our LupusCorner community, including survey results from social platforms, published articles and podcasts, lupus-related news, and what you can expect from us in the near future!

It’s been an eventful month for our LupusCorner community! Your input, feedback, and participation goes a long way in allowing us to create content geared toward what you want to see. So keep participating and sharing your thoughts!

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Instagram Survey Results

Every week we post a handful of surveys on our Instagram page, related to the topics of discussion during that time. Here are the results from those surveys:

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(n=343) Stress affects everyone and it can cause major health changes, particularly for people with lupus.

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(n=351) Acute (a single major event) and chronic (long term) stress are linked in research to many of the symptoms of lupus, including back pain, foot pain, joint pain, general pain throughout the body, insomnia, hives, migraines, and hair loss. It can also increase a person’s risk of infection, which is a huge danger for people with lupus who are already immunocompromised.

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(n=339) Rheumatologists are experts when it comes to autoimmune diseases like lupus. But, that doesn’t mean that they understand all the challenges of being a Lupus Warrior.

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(n=325) Rheumatologists are key members of the lupus treatment team and are often the clinician that will make a lupus diagnosis. But, studies have shown that the primary concerns often differ between lupus patients and their clinicians.

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(n=335) Lupus Warriors sometimes face the need to change rheumatologists, especially if communication is lacking. This means that many people with lupus lack consistency in their lupus treatment.

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(n=137) The foods you eat have a huge impact on the way you feel and your immune system. Eating a healthy diet is particularly important for people with lupus.

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(n=154) Because changing hormone levels effect the immune system in a big way, menstruation cycles, also known as periods, can seriously effect lupus symptoms.

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(n=126) Artificial Intelligence and machine learning is still a young field. There is a long way to go before it becomes a staple of medical practice. However, some limited AI is in active use, helping you navigate your treatment through online scheduling, online check ins, digitization, reminders for follow up appointments and immunization dates, and even determining the dose of a medication you take. Want to learn more? Click here.

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This Months Top Comments

We encourage participation from our amazing lupus community, so we thought we’d share some of the top comments from this past month! Your stories, thoughts, and feelings can go a long way in helping other Lupus Warriors. Here are a few of the top comments from this months posts:

Weather & Climate

“I completely feel this. Recently moved out of Los Angeles and feel so much better in the cleaner air. My rheumatologist agreed that living in less polluted areas can help.” – @CoryMartinWrites

“I feel like I got hit by a freight train today. I have lupus and Sjogrens, and the changes in temperature, humidity and moisture always bothers me. Every inch of me hurts, my neuropathy is angry, my mouth hurts, I am exhausted and I can’t get warm.” – @Mamaboss21

PTSD & Stress

“This makes me so sad. It is like the trauma won’t end. Not only does it take a toll on your mental and emotional wellbeing but then it does on your health, most likely causing a life long ripple effect.” – @Lasenoraseries

“That we are survivors, and everyday is a new day, a new start, new life and full of surprises.” – @Helenajhelen

“It’s not what you see that poses the greatest problem, it’s the unseen… beneath the surface!! You would view me differently if you could see what I’m feeling deep inside!!” – @Alexanderlaurab

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New Release: LupusCorner Podcast Episode 4

Want to know more about lupus-specific diets and supplements? Our new podcast episode is here to help!

Our team discuss lupus diets, benefits of a healthy lifestyle, and the viability of supplements for people with lupus. Stream on Spotify, Apple Podcasts, and anywhere else of your choosing!

Just click play below to stream!

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Top Articles of the Month

Post-Traumatic Stress Disorder (PTSD) and Lupus

Traumatic events have been linked to changes in the immune system, inflammation, and immune cell function. Researchers are still trying to determine the exact changes that occur due to trauma and stress, but it is clear that post-traumatic stress disorder, also known as PTSD, causes people to be more vulnerable to developing autoimmune diseases such as systemic lupus erythematosus (SLE).

Read more.

Supplements and Lupus

People often try to add nutrients to their diet by taking them as supplements, separately from their food. Supplements can take the form of specially-formulated gummies, capsules of ground medicinal herbs or spices, or hard tablets. In theory, they can help people make sure that they are taking in enough nutrients, or some sort of substance with health benefits. However, supplements are not always absorbed properly by the body.

Read more.

Air Quality and Lupus: Take a Deep Breath

The air we breathe is linked to many different health issues, and it goes far beyond lung infections and asthma. According to the World Health Organization (WHO), an estimated 4.2 million premature deaths globally are linked to air quality.

Read more.

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What’s Next? Upcoming Articles and Information

Articles to expect in the next month:

  • Societal Expectations, Judgements, and Lupus
  • Dry Eye, Eye Symptoms, and Lupus
  • Stressors and Lupus: Management Techniques

What else to expect:

  • LupusCorner Podcast: Episode 5
  • LupusCorner Q&A Forum Survey
  • New lupus-specific social media content

Follow us on Instagram, here! Come join our community and be the first to see new lupus content!

Comments (2)

2 thoughts on “LupusCorner Community: What’s New & Noteworthy

  1. Hi to you, I am so glad I found you! I have just been diagnosed with lupus, 5 years after having sepsis and small cell bladder cancer. I am particularly interested in the healthy foods that help to fight lupus.

    1. You need an anti inflammatory diet with little or no sugar, which means no breads, pasta, or potatoes. Pay attention to how foods make you feel. Processed foods are the worst to consume. Good luck

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