A guide for living with lupus
Living with lupus can be challenging and overwhelming. From trying to explain lupus to others, to managing work or school, and trying to make time for yourself, it all can feel like a lot to juggle.
A guide from the Lupus Foundation of America helps to break down some suggestions that can help to ease some of the extra challenges that come along with living with lupus.
Carrie Ann Inaba Talks About Living with Lupus: 'I Stopped Going in the Sun'
American television personality, dancer, choreographer, actress, and and Dancing with the Stars judge Carrie Ann Inaba recently discussed her lupus diagnosis with PeopleMag.
“My doctor didn’t tell me I had lupus,” Carrie Ann Inaba revealed
Breakthrough therapy designation to obinutuzumab for patients with lupus nephritis
The FDA recently granted breakthrough therapy designation to obinutuzumab for patients with lupus nephritis.
The designation arrived after the medication showed positive results from a phase 2 study.
Did you know that anemia affects approximately half of all individuals with active lupus?
💉Anemia can be measured and discussed in different ways, such as low red blood cell count, low hemoglobin, or low hematocrit. 💉In the most important sense, anemia means too little hemoglobin. This is the protein inside red cells that carries oxygen from the lungs to all the tissues of the body. 💉Fatigue, a very common lupus symptom, is generally the first and most common symptom of anemia.
A helpful resource from the Lupus Foundation of America discusses anemia in those with lupus, and some common causes.
Vet Vowed to Run First Half Marathon After Lupus Flare Put Her in Kidney Failure
A recent article from Runner’s World shares the journey of Stacey Halse, a lupus warrior who fell in love with running.
It shares her journey through lupus flares, kidney failure, and participating in half-marathons, 10K and 5K runs.
At first, Stacey Halse’s doctors weren’t thrilled, but she was determined to do it safe—and do it big.
Up to 80 percent of people with lupus experience fatigue
A resource from the Lupus Foundation of America discusses some strategies for helping to manage fatigue, from listening to your body to aerobic exercise, planning ahead and more.
Pregnancy Outcomes Improved in Lupus
A recent article from Medscape discusses study findings showing that pregnancy outcomes have improved in American women with SLE over the last two decades.
The findings were recently published in the Annals of Internal Medicine.
Pregnancy outcomes improved among women with lupus over the past 2 decades; one expert questioned results and stressed that these women are still at high risk for poor outcomes such as maternal death.
Small lifestyle changes that have helped others with lupus be diligent with sunscreen
A recent article discusses small lifestyle changes that have helped others with lupus, from saying “no,” to being very diligent with sunscreen.
What’s something you would add to the list? Share below!💜
What Exactly is Lupus?
Seeker recently created a video about systemic lupus. From history and background to possible causes and more, the informative video touches on several aspects of the condition.
Our immune system is an incredible thing. It’s a complex, disease-fighting machine, capable of fending off attacks from bacteria and viruses. But what happen…
These Possible Triggers Could Explain Why Lupus Attacks Any Part of the Body
According to the Lupus Foundation of America, while an individual’s genetics may increase the likelihood that he or she will develop lupus, generally there will be some kind of environmental trigger to set off the illness or to bring on a flare.
A recent article from Prevention Magazine discusses eight possible contributing factors, and provides some background information on each.
The autoimmune disease causes debilitating symptoms—and there’s no known cure.
We love hearing about your lupus journeys!
We love hearing about your lupus journeys! If you would like to have yours shared, please send us a message; we’d love to hear from you.
“I’ve been battling lupus for 30 years. It’s a scary and unending journey. But, life carries on and you get stronger every time there’s a relapse.
For me, the relapses start with a lot of tears and depression. Then I shake myself out of it and try to battle it. Give it all I’ve got.
Today when I look back I am in perpetual pain. It never goes. Every joint pains and the reports get scarier. Every step walked is with pain but you do NOT give up.
I put up a brave front for the world, but deep within is the fear, the tears, the depressing moments and the anxiety. So…what do you do…you just wear a red dress and put on bright red lipstick and kill people with your hotness.😉😉
I hide all those lupus butterfly marks with the latest concealers and limp away… It doesn’t matter… my smile will be enough… Cheers my beautiful friends. Let’s fight it all together ❤️❤️
All throughout May we have been featuring the journeys of community members who have shared their stories with us. If you would like to share your story, please message it to us!
“Two years ago I moved from Germany to the very warm and sunny Israel. And after years and years of being sick without getting any diagnoses, I finally got one after I moved: Lupus SLE.
Since then a lot of things changed for me because the disease started to really break out after I moved. A lot of things were suddenly not possible for me anymore. I loved to do sports, going the gym and I had (even though I became sick quite a lot) a normal life.
After the break out of the disease, I started being tired all the time, and sometimes I hardly make it out of bed. Most of the time I can’t stay up longer than 8 or 9 pm. I struggled with a high fever for months and of course there weren’t sports of any kind in my life for a long time. After those long, horrible months of being sick I tried slowly to get back to sports, but at first it didn’t really work. That I wasn’t able to do the things that I loved anymore stressed me so much that my condition got worse again.
Now it’s been almost two years since my diagnosis and today, after I had a bad flare in the morning with joint pain, rashes, and a strong weakness, I managed to run a race in the evening. It was my first race since being diagnosed, and especially after what happened in the morning I am so proud that I managed to do that.
I may no longer be in the condition I used to be, but I’m 10 times more proud now when I manage to do something like a small race. Because it shows me that there is still hope! 💜
In honor of Lupus Awareness Month, we are sharing stories sent to us...
Throughout this month, in honor of Lupus Awareness Month, we are sharing stories sent to us from members of our community! If you would like your story to be featured, send a message to our inbox.
“For me it took 19 years to be diagnosed with Lupus. I saw over 10 specialists, 7 biopsies, 4 broken bones and countless blood tests in hospitals all over the world. Then all it took was one GP to see my rashes and they knew what was wrong. I had the classic lupus signs that so many other doctors had dismissed as “in your head”, “accident prone” and “unlucky”. My lupus was attacking the joints, kidneys, lungs and luckily my skin. The skin was the only reason I got a diagnosis.
I have scars inside and out, but now wear them with pride and always want people to know what they are. Any new doctors or nurses I meet I show them. I educate them in the hope that someone else might see and get their diagnosis much sooner than I did.
Medical technology has come so far in helping those with lupus once they have a diagnosis. Yet the lack of awareness is what can take that diagnosis so long.”
What Is Lupus? And 9 Everyday Things That Trigger It
A recent article from Reader’s Digest discusses lupus triggers, including sunlight, stress, and more.
Are there other triggers you’ve experienced that were not included on the list? Share below!
Here’s the lowdown on this difficult-to-diagnose autoimmune disease—and what you can do to minimize its potentially damaging effects on your body.