Tag Archive | Lupus Foundation of America

What is lupus?

Lupus. What is it? I could say that it is an autoimmune disease, but you don’t answer a question with part of it’s definition! Rather, lupus is a chronic inflammatory disease, characterized by it’s fatigue. But anyone can get fatigued; so how do you differentiate between lupus and being tired due to lack of sleep or a host of other conditions? There are laboratory tests referred to in: lab tests helpful in differentiating lupus from other illnesses and they help predict symptoms which your doctor will order to rule in or rule out a diagnosis.

But I’m getting ahead of myself. Lupus is a disease, afflicting @1.5 million Americans, can be fatal and one in which the immune system of the sufferer goes haywire. Normally, cells of the immune system, detect foreign invaders, ‘mark them as foreign’ and other cells engulf them and destroy them.

However, in lupus, the immune system sees the body’s own cells as foreign, and mounts an attack on them: on SELF. That is why lupus is considered an autoimmune (immunity against oneself: auto). In lupus, any organ can be the victim of an attack. The lungs can be attacked in pleuritis, or the heart in pericarditis or the kidneys in nephritis.

The blood vessels themselves can be attacked in vascultis or the brain in lupus cerebritis. This short video, briefly explains autommunity, it you wanted to give friends or family members a brief tutorial, I’ve found this video to be very short and helpful:

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Let’s take a walk on the wild side!

Today, I added a section. Sometimes, our lives (through no fault of our own!) can get deadly dull and can use a little levity and spicing up. The new category is a page where you can, SHOP ‘TIL YOU DROP, and since I’m limited in space, an AMAZON SEARCH BOX IS provided.

Sheer distraction , the fun of shopping sometimes make us dwell less on ourselves and more on others; to what end? The pain isn’t noticed as much, when you make those needed holiday-or every day purchases, you forget for one minute about what hurts, about the hand that you’ve been dealt. And now is about the time when shopping becomes a way of life, for the holiday seasons are coming upon us!

Plus, isn’t shopping fun!! A percentage of the proceeds of any purchases will go to the Lupus Foundation of America and another percentage to the S. L. E. Lupus Foundation. SO, SHOP TIL YOU DROP!!


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What causes lupus-Podcast

Podcast Capture

Every week during Lupus Awareness month, the Lupus Foundation of America will be sponsoring a podcast which I’ll be publishing here. Because this is a podcast, there is no video, but clicking on the link below will lead you to an 8 minute audio. This week’s podcast discusses briefly what is lupus and what predisposes someone to lupus and what DOESN’T predispose someone to lupus, but don’t forget to turn on the volume!!

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Lupus Awareness Month-events

Walking In Purple For Lupus Awareness In Honou...

Walking In Purple For Lupus Awareness In Honour To A Dear Friend (Photo credit: andreasnilsson1976)

There are many events that have been ‘added’ to the schedule of routine lupus events, in honor of Lupus Awareness Month. Rather than list them all, I’ll provide a link to a page which lists them by state, so you can easily locate an event near you:

Lupus Events Calendar

The emphasis of this list is on special events sponsored by the lupus foundations of various states or by the Lupus Foundation of America. There is mention of special support groups in various parts of the country and chats with physicians. There are events for tomorrow May 5th, so I’ll publish this post and I hope that you can join!

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Forty years ago, I lost my father and 3 years ago, my mother passed away. Yes, they are together, but the stress of that has been so difficult.

The attached fact sheet about lupus will outline the things I am going to speak to this month: So, a post a day and FOLLOW ALONG! I try to address these topics, but they come better from the horse’s mouth! Follow along:

Fact Sheet” is an excerpt directly from the Lupus Foundation of America and we’ll itemize each symptom in an attempt to understand lupus better

  1. “Lupus is a chronic, unpredictable and potentially fatal autoimmune disease in which the immune system is out of balance,” That is saying that lupus is chronic (it never goes away, but it may not show itself all the time.
  2. that inflammation can wreak havoc on all the organs (including the heart, lungs, skin, kidneys (requiring transplant or even dialysis). It is potentially fatal if the attack of lupus is on the heart can cause blood clots in heart, depriving the heart muscle of needed oxygen (heart attack). Lupus can also cause strokes; the attack of lupus forming blood clots in the brain, deprives the brain of needed oxygen. A stroke can result.
  3. Lupus can attack the nervous system, resulting in CNS lupus or lupus cerebritis. All of these attacks and more increase the likelihood of lupus being fatal.
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Ways to Spread the Word about Lupus

The month of May is Lupus Awareness Month and Wednesday is the 1st of the month-OR MAYDAY! There are lots of lupus awareness raising events, not the least of which is the Walk for Lupus on the 18th and on Friday WEGO Health is sponsoring a lupus roundtable.

What can the average person with lupus do to raise awareness? For starters, have you seen the sides of this page, what color predominates? Yes, you’ve got it: POP (Put On Purple). For the ladies, a bit of lavender eye shadow dolls it up nicely!

I’ve linked to a few sites that have purple lupus paraphernalia at the right side, but two events bear mentioning up front: The Walk for Lupus on the 18th and this Friday’s (May 4), Wego Heallth lupus roundtable. For further information click on the link for Wego Health or The Lupus Foundation for America.

What can you do to further the awareness of lupus as a REAL disease, that has REAL consequences? If you have a blog, which some of you may, you can write a few posts during the month about lupus. Or, tell friends on Facebook how lupus has affected your life and the lives of others around you?  It is so important to emphasize, not only the physical toll that is exacted, but the financial devastation and emotional toll, strained relationships.

Besides telling/writing, you can raise awareness by TALKING about the illness. Due to the popularity of the internet and ease of accessing information, a mention of lupus and a few reliable research sites goes a long way. The Lupus Foundation of America and The S.L.E. Lupus Foundation maintain websites with reliable information about lupus.

Shy about asking people to donate money? On May 10, you see one of the logos I have on the right of this page, is to BAND TOGETHER FOR LUPUS AWARENESS. What exactly does that mean? On May 10, WORLD LUPUS DAY, text the word, LUPUS to 80888. When you receive the word YES,  you’ll be confirming to a gift. Then, text 10 people about lupus and it’s side effects. Then ask each person to donate $10 to the Lupus Foundation of America. This texting propagates and before you know it…

You can also send an eCard by filling out this form: http://donate.lupus.org/site/Ecard?ecard_id=1461&pw_id=1921 These are things to do on May 10th. During the rest of the month, there will be posts on other awareness-raising activities.

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The Long Journey of Lupus

Long Journey for People with Lupus

“An estimated 1.5 million Americans have a form of lupus, a chronic, severe autoimmune disease for which there is no cure. Every day these patients must deal with their own immune systems turning against their bodies, resulting in health effects including heart attacks, strokes, seizures, organ failure, and miscarriages.”  Lupus Foundation of America

Yet, while many people feel the impact of lupus, greater awareness of the disease a must. Many people have symptoms that could easily be explained by another illness, fatigue (not enough sleep), dry mouth (that new medication that you started or not drinking enough water), stress headaches (wouldn’t you be stressed if you were tired all the time and had a dry mouth and because of the dry mouth, watched your dental bills rise?).

.Some doctors, not thinking of the heartache this can cause, will refer you to a psychiatrist for treatment of hysteria, mental illness or PMS. All the while, you’re not a hysterical female; but I’m sure you’ve seen more than one doctor’s eyes roll back!

Many people who have lupus aren’t aware that they have a potentially disabling and life-threatening disease and because oftentimes, their symptoms ‘come and go,’ they tend to minimize and categorized lupus as a minor inconvenience.

That is, until they need to face some of lupus’ more devastating consequences, such as lung or heart problems, blood clots or stroke, severe joint problems, blood clotting disorders or kidney failure for which they need dialysis.

It is precisely because lupus can BE life-threatening, can kill, and present with such a list of vague symptoms that awareness must be raised. Awareness so more research dollars ‘go’ towards finding the cause and cure for lupus and advocating for lupus patients.

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