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Lupus

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.

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Alzheimer's Disease

Make time for self-care

There is so much to consider as a caregiver to someone with Alzheimer’s. As Alzheimer’s progresses, your role as a caregiver changes as well.

A helpful resource from the Alzheimer’s Association helps to shed some light on the various aspects of care-giving, including making sure to make time for self-care as well.

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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

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Alzheimer's Disease

Head device reduces memory loss in 7 out of 8 people

🔬🧠Recent research involving eight Alzheimer’s patients found that a new wearable device emitting electromagnetic impulses was able to significantly improve memory loss in seven of these participants within two months.🧠🔬

Researchers worked with the participants with mild to moderate Alzheimer’s disease and their caretakers. The participants wore the device twice a day for two months, with each session lasting one hour.

At the end of the two months, none of the participants had experienced any side effects. The investigators also used The Alzheimer’s Disease Assessment Scale-Cognitive Subscale test (ADAS-cog), the most widely recognized method of assessing cognitive function. It was found that seven of the eight participants saw an increase of over 4 points in cognitive performance on the ADAS-cog scale after two months. According to the researchers, it is as if the participants’ cognitive function had “rejuvenated” by a year.

While far more research is needed regarding the device, scientists are encouraged by these preliminary findings. It is reported that another trial is due to last around 17 months, on average, and will include about 150 participants with a diagnosis of mild to moderate Alzheimer’s disease. The findings from this study have been published in the Journal of Alzheimer’s Disease.

A clinical trial has found that an innovative electromagnetic therapy device significantly reduced memory loss in seven out of the eight participants.

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Lupus

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.

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Alzheimer's Disease

Frontotemporal dementia: Devastating, prevalent and little understood

A recent article and interview from 60 Minutes discusses frontotemporal dementia, or FTD.

FTD is the number one form of dementia in Americans under the age of 60. The causes of this condition are unclear.

The condition attacks the frontal and temporal lobes of the brain, the areas controlling personality and speech. Individuals will either display such uncharacteristic behavior that their loved ones can hardly recognize them, or they lose the ability to recognize themselves.

Bill Whitaker reports on FTD, a devastating illness and the most common form of dementia for Americans under the age of 60

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Alzheimer's Disease

Dr. Oz's Mother Has Alzheimer's: I'm Feeling Guilty Because I Completely Missed the Signs

Dr. Oz recently shared that his mother has been diagnosed with Alzheimer’s.

A recent article from People shares some of the details regarding her diagnosis.

The host of The Dr. Oz Show also learned that he carries one of the genes for Alzheimer’s

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Alzheimer's Disease

Me and Momma 2014

💌We’ve received another touching moment from one of our community members. 💌

“This is my most cherished memory with my momma. I’m the youngest of 4 and the only girl. She was my best friend and I miss her every day. She put up a hard fight for 8 years. We lost her on 7/9/2015.”

Me and Momma 2014

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Alzheimer's Disease

Could targeting variants of this gene help fight Alzheimer's disease?

Researchers have identified gene variants that appear to be able to alter the risk of Alzheimer’s disease by changing levels of a protein that is present in cerebrospinal fluid.

It was found that variants in the MS4A4A gene influence the risk of both early and late onset Alzheimer’s disease. These variants alter levels of the TREM2 protein, which helps the brain to clear away excess amyloid and tau. Buildup of amyloid and tau are hallmarks of Alzheimer’s disease.

It is hoped that this information can help to the development of a way to increase the levels of TREM2 in cerebrospinal fluid in an effort to help protect against Alzheimer’s disease or slow the development. The findings have been published in Science Translational Medicine.

Researchers have found variants of a gene that influence Alzheimer’s disease risk through their effect on a cerebrospinal fluid protein.

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Lupus

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.

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Alzheimer's Disease

Too Much Napping May Signal Alzheimer's

Recent research shows that excessive napping may be an early sign of Alzheimer’s disease.

Researchers have found that the areas of the brain that keep you awake during the day are damaged in the early stages of Alzheimer’s, which is why those with the condition may nap excessively long before they start to forget things. Further, the scientists also found that damage to those brain regions was caused by the protein tau. This gives more evidence that tau may play a larger role in Alzheimer’s than the amyloid protein.

The findings were recently published in the journal Alzheimer’s and Dementia.

Areas of the brain that keep you awake during the day are damaged in the early stages of the memory-robbing disease, which is why people with Alzheimer’s may nap excessively long before they start to struggle with forgetting things, the study authors said.

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Alzheimer's Disease

Could a blood test help predict the development of Alzheimer's?

Scientists at the Washington University used mass spectrometry to measure amounts of two types of amyloid beta in the blood: amyloid beta 40 and 42.

They found the ratio of these types in the blood goes down as the amount of the substance in the brain increases. The new test may be able to warn of amyloid deposits forming years before they can be identified by PET scans.

When combined with risk factor evaluation, the test is said to have a 94 percent accuracy. It is hoped that early detection will allow people to take action to slow down disease progression.

The findings have been published in Neurology.

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Lupus

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.

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Alzheimer's Disease

Alzheimer's: Common gene explains why some drugs fail

Recent research shows that a certain gene may explain why some Alzheimer’s drugs work in certain people but may fail in others.

The gene is called CHRFAM7A, and it is specific to humans, though only 75% of people have it. It is a fusion gene, a fusion between a gene that encodes a receptor for the neurotransmitter acetylcholine, and a type of enzyme called a kinase. Acetylcholine plays a key role in memory and learning, and researchers have long linked it with the development of Alzheimer’s.

Further research is needed to understand this concept, but researchers hope this can help pave the way to more personalized approach toward treating Alzheimer’s. The findings were presented at the Alzheimer’s Association International Conference, which took place in Los Angeles, CA.

A new study helps to explain why some Alzheimer’s drugs work in some people but not in others, and why some yet may succeed in animals but not in humans.

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Lupus

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.

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Alzheimer's Disease

New clues on why women's Alzheimer's risk differs from men's

Researchers have found differences in how tau, a protein that forms tangles that destroy nerve cells, spreads in the brains of women compared to men.

Scientists at Vanderbilt University studied scans on 301 people with normal thinking skills and 161 others with mild impairment. They mapped the tau deposits and correlated them with nerve networks. It was found that tau networks in women with mild impairment were more spread out, suggesting that more areas of the brain were affected.

Further research is needed to understand the differences in disease progression among females and males. The study findings were presented this week at the Alzheimer’s Association International Conference in Los Angeles, California.

Two-thirds of Alzheimer’s cases in the United States are in women, and it’s not just because women live longer, experts say.

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Alzheimer's Disease

After multiple failures, Alzheimer's researchers turn their attention to inflammation

Researchers are beginning to focus their efforts on targeting brain inflammation in an effort to help treat Alzheimer’s. A recent article from NBC discusses these current efforts.

The past decade of Alzheimer’s disease research has been fraught with disappointment. But some scientists say they’re more hopeful than ever a cure will be found.

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Lupus

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.

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Lupus

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!💜

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Alzheimer's Disease

Hypertension treatment may slow down Alzheimer's progression

Results from a small study published in the journal Hypertension show that a drug used to treat hypertension may help to improve blood flow to the brain in patients with Alzheimer’s.

It is emphasized that more research is needed across larger groups and for longer periods of time to fully understand the potential benefits.

New research finds that nilvadipine, a drug doctors commonly use to treat high blood pressure, increases the blood flow to the brain’s hippocampus.

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Lupus

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…

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Alzheimer's Disease

This Is A Major Misconception About Caring For Someone With Alzheimer's

A recent article from Women’s Health shares “12 Things No One Tells You About Alzheimer’s.”

Each one comes from either a medical professional or a caregiver, and ranges from the ability to still have meaningful relationships, to exercise, progression, and more.

What’s one thing you would add to the list? Share below!

So someone you love was diagnosed…now what?

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Alzheimer's Disease

Possible Alzheimer's prevention breakthrough reported

Researchers from the University of New Mexico are testing a possible vaccine they developed to help prevent Alzheimer’s disease.

The vaccine has been tested on groups of mice with Alzheimer’s. The vaccine targets pathological tau, a protein commonly found in the brains of Alzheimer’s patients. The vaccine appears to have cleared out the pathological tau in the mice tested.

More research is needed to continue developing the vaccine, in addition to human trials.

Read more: https://bit.ly/2Iwjclg
University of New Mexico researchers say they’ve apparently found way to prevent formation of brain protein instrumental in disease’s development

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Alzheimer's Disease

ALZHEIMER'S DISEASE FROM MY PERSPECTIVE | Marieta Kysel | TEDxYouth@ECP

Marieta is a 16-year-old who grew up in Morava and spent most of her early childhood with her grandmother. In her TED talk, Marieta discusses what her grandmother’s journey with Alzheimer’s has taught her.

Marieta is a 16-year-old ECP student who grew up in Morava and spent most of her early childhood in her grandmother’s company. When she was told her grandmot…

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Lupus

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.

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Lupus

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 ❤️❤️

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Lupus

Lupus Journeys

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! 💜

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Lupus

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.”

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Lupus

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.

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