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Lupus Awareness Month

Davis Orr

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May is Lupus Awareness Month!

Thanks for stopping by for this week’s installment of the awareness blog! I hope you all enjoyed our last post about Celiac disease. I guess enjoyed might not be the right word. I’m not entirely sure how to phrase it appropriately, but… I hope you all found it informative, interesting, not a total snooze fest.

For all returning readers, we’re thrilled to have you back! To all our new readers, welcome and we’re so happy to have you! This blog is dedicated to raising awareness for all kinds of causes and illnesses. We hope to send you out into the world with a wealth of practical knowledge that you can use to help those you care about, or make you able to recognize signs or symptoms of illness in order to achieve early diagnosis and the best possible outcome. It’s already come in extremely helpful in my own life. One of my first posts was about Lyme disease, and not even a week later I found a tick bite. Guess what… that post may have prevented chronic Lyme from developing years from now, because I knew to head to the urgent care to assess my symptoms. They gave me some antibiotics, and I’ll be absolutely fine. Knowledge is power. Knowledge is prevention! All right, enough of me bragging about how I basically saved my own life.

Today’s topic may be a repeat, however, there is so much to cover that we think it warrants a second post. It’s lupus awareness month; so let’s dive a little deeper, shall we?!

Now, I know our first lupus post covered a lot of the basics, so I’m gonna share some fun facts about lupus with you guys in this post. Cool? Cool.

Let’s start off with the statistic that makes this second post about lupus worth doing. There are more than one and a half million people out there (in the U.S.) who have lupus. That’s a lot of people, am I right?! Regardless of how large the community of people with lupus is, over 70 percent of the U.S. population between 18 and 35 don’t recognize the name of the disease, or know little to nothing more about it than the name. That’s a whole lot of people! Those people are co-workers, employers, friends, family members, boyfriends/girlfriends, etc. That means that the majority of lupus patients have to constantly explain their health situation to those around them in order to be understood, and get whatever accommodations they need. So, not only is having lupus physically exhausting, it’s emotionally draining, too! Explaining yourself to people when you may not want to share your entire life story or medical history with them takes a toll. Your medical history is your business. This is why raising awareness is so crucial.

Guess how many people were accurately diagnosed with lupus the first time? I’ll give you a hint: it’s way more discouraging than you probably think. Only 63% of people who suffer from lupus were correctly diagnosed from the start. The majority of patients have had to endure a wild-freaking-goose-chase just to be properly diagnosed. Why is that, you ask? Because autoimmune diseases are like a shredded cheese blend, it’s hard to pick out one from the other when they’re all the same color. Autoimmune disease symptoms tend to be common throughout many of the different diseases. Many of the diseases mimic each other, and so, as you can imagine, patients are often misdiagnosed with the wrong autoimmune disease. The one comforting thing about that is that since the symptoms are shared throughout the different kinds of diseases, many of the treatments for said symptoms are the same despite the diagnosis. The treatment for widespread inflammation is gonna be NSAID’s and steroids, most likely, no matter what. Where the diagnosis becomes crucial is in how you prevent the disease process from progressing. Not all root causes can be treated the same way. Lupus, for example, may warrant chemotherapy, while others may require biologics. All in all, the average length of time it takes a lupus patient to be correctly diagnosed is six (long) years.

Are you a dude? Well, lucky you! Cause only around 10 percent of patients with lupus are men. The odds that you have lupus are pretty low. I mean, you might have something… but statistically speaking, it’s probably not lupus. If you’ve done the math, then you realize that that means around 90 percent (90 PERCENT!!!) of patients with lupus are female. As if being a girl didn’t already come with the cards stacked against you. If you’ve ever had a horrible period or given birth, you know that things weren’t exactly evenly dispersed between the sexes. But wait, there’s more! Are you a woman of color? The rate of lupus is highest amongst African-American women.

As I mentioned in my last lupus post, autoimmune diseases tend to run in families, but they don’t always present themselves in the same way. Often, people who have lupus have a blood relative that has an autoimmune disease. In fact, 20 percent of people with lupus have a blood relative with lupus as well. While this statistic tends to sound like a curse to most, it can also be a total blessing. That means having someone in your family understand exactly what you’re going through. When you consider just how isolating a chronic illness can be, that’s a pretty huge silver lining. Obviously, nobody would wish to have someone to be sick with, but if you’re both gonna have lupus either way; at least you have each other to go through it with. You can be each other’s support buddy. That’s kinda nice, right? I do realize, however, that neither of you having lupus is clearly preferable.

Last one, and I saved the most positive statistic for last so we could end it on a high note. I try not to leave you all hanging. So, we’ve covered that nearly one and a half million people in the United States are diagnosed with lupus. Again, that’s a lot of people. Over 75 percent of those 1.5 million lupus patients report that they managing their disease well. That’s awesome, right?! Considering how tricky the disease can be to diagnose, at least treatment is so effective once you get there. Now, that doesn’t always mean your life goes back to normal, like it was before your symptoms began. Chances are you’ll always have to deal with the disease in some way, shape or form (although, some people do achieve remission). People adapt, and change their lives to accommodate the disease without sacrificing their happiness. It may even make you reevaluate your life so that you prioritize what’s most important to you. In the long run, the people who do that live more fulfilling lives than the ones who never had to. So, all I’m saying is, there’s always a silver lining.

And with that, I think I’ll wrap up my post.

If you’re new to our blog, thanks for reading!!! I hope you found it to be a worthwhile read. If you have a second, I’d just like to tell you a little bit about our company and why it is that we have started this awareness blog.

Personalized Cause is an awareness accessory company based in the United States. Personalized Cause is unique because unlike other awareness ribbon companies, we offer our customers the ability to customize their awareness ribbons. We are the only company in the United States that offers custom awareness ribbons without a bulk order. We are also the only company to offer custom awareness ribbons with engraving.

This business was founded on the belief that awareness ribbons can actually change the community of the person who wears it. We have seen first hand how one personalized awareness ribbon can spark a conversation, and create a domino effect of compassion and understanding. We know that putting a name to a cause can help others to relate to that cause better. An awareness ribbon alone does not always convey the reason one wears it. That’s why we created personalized awareness ribbons. What better way to advocate for someone you love than to wear a personalized awareness ribbon with his or her name on it. You’d be surprised how many people respond to it with compassion, and a genuine interest in your story. And, there is no better way to raise awareness for a cause than through the stories of those affected by it.

Custom awareness ribbons can also be a surprisingly powerful way for one to take ownership of one’s health. Often, people who experience a new diagnosis tend to feel like that illness controls their life or their choices. In my experience, wearing a personalized awareness ribbon with my disease engraved on it was an empowering way for me to reclaim ownership of my life, rather than feeling like the illness owned me. That may sound strange to some of you, but I think there may be a few of you out there who can relate. I believe in these little awareness ribbons. They are a symbol of community, and belonging, and inspiration. They are a sign to others that you are fighting, either for yourself or someone else. They are an representation of quiet support. Long story short, a little ribbon goes a long way. ;)

#lupus #SLE #invisibleillness #chronicillness #lupusawareness #chronicpain #autoimmune #awareness #awarenessribbon #cancerribbon #autoimmunedisease #spoonie #awarenessmonth

World Lupus Day

Davis Orr

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Today is World Lupus Day!

Looks like it’s time for another installment of your very favorite awareness raising blog! How exciting! And let me tell you, this is going to be a good one!

But first, lets take a second to answer a few questions from my last blog. I got quite a few questions about why we started this awareness blog, and I would be thrilled to reiterate our story for newcomers.

Personalized Cause is an awareness accessory company based in California (we do ship international). Personalized Cause specializes in personalized awareness ribbons, also referred to as custom awareness ribbons, where you can add a name, date or message to whatever ribbon you choose. Our custom awareness ribbons are engraved with your choice of text. We also carry the original awareness ribbon pins, without customization, as well as wristbands and fabric ribbons (which can also be customized) for bulk orders. We are the #1 custom awareness ribbon source for personal orders (meaning not bulk order) in the United States. There are not currently any other companies that offer the type of product we do at the quality we do. That’s our deal. We’re awareness ribbon people. We’re very proud of that.

At Personalized Cause, we know that awareness ribbons have the ability to raise awareness, educate others, represent hope and inspire others. Awareness ribbons can signify to others your support for a cause or illness, or demonstrate your support for someone who is struggling. Awareness ribbons can also be a powerful way to take ownership of your health, rather than letting your health take ownership of you. Yes, this is a sales pitch, and yes, I truly believe everything I’m writing because of my own experience (which is exactly why I got involved with this company. So, while this awareness blog is sponsored by an awareness ribbon company, it is ultimately about raising awareness for as many causes as possible in order to eliminate stigma, misconceptions, misinformation, and ignorance. We truly have the very best intentions in our endeavor. Not to mention that I, personally, put my heart and soul into writing these in hopes that it may help someone out there.

Without further delay, lets get to it, shall we?

Today we’re going to be looking at a disease called Lupus. Yes, the disease that Selena Gomez has. Gotta love the awareness that one celebrity can bring to a disease. Purple awareness ribbons are the most popular choice to represent Lupus, although some organizations and countries prefer to use orange. Both are correct. It’s really just a matter of preference or affiliation.

Lupus is an autoimmune disease, which means that the body’s immune system attacks itself mistakenly. Lupus is a chronic condition, meaning that it is ongoing without a cure, although the disease activity and symptoms tend to wax and wane throughout a patient’s life. These phases of disease activity are called “flares.” Flares can be triggered by any number of things, for example, overexposure to the sun, other illnesses like a cold or flu, or overexertion (aka pushing yourself and doing too much). Flares can also arise with no apparent cause. Flares can last anywhere from a couple days to weeks or months. They can subside over time on their own, or require medication to control disease activity.

Lupus is an inflammatory disease, meaning that it causes the body to produce inflammation without any reason (like an acute injury, or problem with the function of an organ, or infection). Over time, if left untreated, inflammation can cause permanent damage and lead to other health issues. The inflammation can affect pretty much any organ in the body, such as the joints, skin, heart, liver, kidneys, muscles, blood cells, lungs, brain… pretty much everything is on the table with Lupus. If you’re one of those people who thrives in chaos, loves surprises, and is great at hitting a constantly moving target… Lupus is the disease for you! (I hope that doesn’t offend anyone, I know that the disease can be very serious and even deadly.)

Lupus can be a real pain in the ass to diagnose. Diagnosis can often take years because the signs and symptoms of Lupus tend to come and go (in flares), and the symptoms also resemble the symptoms of many other health problems. Autoimmune diseases tend to share many of the same characteristics that make it difficult to narrow down, at times. As a beloved doctor once told me, autoimmune diseases are all the same ice cream, they’re just different flavors. That saying has stuck with me for over 15 years. It’s a great little metaphor, so I thought I’d share it with you all. One symptom that leads doctors straight to the Lupus diagnosis is the telltale butterfly rash that appears on the face, though not all patients experience the butterfly rash. It is called the butterfly rash because the rash covers the bridge of the nose and spreads out onto the cheeks, resembling a butterfly.

The butterfly rash is also the source of the unofficial Lupus mascot… the butterfly. I know you’re thinking, “Wait, doesn’t Lupus mean wolf? Why isn’t the mascot a wolf?” Good question, and the answer is: who knows! Maybe butterflies are just a little cuter and friendlier. Personally, I think the wolf is more appropriate considering that your body is now basically hunting itself, but whatever. I get it, though, butterflies are beautiful, and wolves are scary.

Lupus is not necessarily heredity, although your chances of developing the disease are higher if a parent has it. It’s also more common in women than men. The disease can be triggered by external factors, for example, sunlight, infections, medications, or foreign bodies that are implanted (looking at you breast implants).

Each case of Lupus is unique, and each patient’s experience of its symptoms is different. The disease process unfolds in it’s own way, and there is no road map to predict how or where it may lead. Some patients get better on their own and require no ongoing treatment, while others will depend on treatment for their entire lives. I want to make this point because while I know how scary and bleak this sounds, you have to realize that none of the symptoms are guaranteed to affect you at all. You may have a very mild case. Just because its worst-case scenario can be pretty bad, doesn’t mean it will be.

Get to the symptoms already, right?! Here we go.

Lupus tends to affect particular systems in each person, for example, the nervous system, circulatory system, tissues, cells, etc. Symptoms are generally specific to how and where the disease affects a person. The following are the symptoms most experienced by those who suffer from the disease.

  • Joint and muscle pain, joint stiffness, and swelling.
  • Fatigue, aka being fricken exhausted 24/7.
  • Fever, particularly ongoing.
  • Butterfly rash on the face.
  • Sensitivity to sunlight, possibly resulting in skin lesions.
  • Dry eyes.
  • Raynaud’s phenomenon/syndrome: your fingers and toes turn blue or white and feel cold.
  • Shortness of breath.
  • Chest pain (always see a doctor ASAP if you experience chest pain).
  • Headaches.
  • Confusion, aka brain fog.
  • Memory loss.

If you experience more than one of these symptoms persistently, see your primary care physician and talk to them about a referral to a rheumatologist. Don’t rely on your doctor to bring it up. Even though doctors hate it when people think they’ve diagnosed themselves with something using the Internet, you are responsible for your health. It is essential that patients advocate for themselves, educate themselves, and listen to their gut if something doesn’t feel right. You have the right to get a second opinion, and you should not feel bad or worry about offending the current doctor. In the end, you are the one that pays the price if they are wrong, not them. So, speak up, and don’t let anyone talk you out of your symptoms, or talk you into a treatment.

There is no definitive blood test for Lupus, but blood labs are very important in assessing whether or not you have it. Certain blood tests, like the Antinuclear Antibody test, or Sed rate (short for sedimentation rate, measuring the amount of inflammation in the body) are crucial.

Lupus has quite a few medicines in its arsenal. Unfortunately, there haven’t been many new drugs developed specifically for Lupus in a very long time. Lupus is treated with four categories of medications. The first category is NSAIDs, which stands for non-steroidal anti-inflammatory drugs. These include over the counter medications like ibuprofen, but there are also special prescription NSAIDs, which are better to take for long periods of time. NSAIDs are used to treat pain, swelling and inflammation caused by the disease. Plaquenil is a popular medication for Lupus, which is actually in the antimalarial category of drugs. The third category of drugs is corticosteroids. These are everybody’s most and least favorite because they work very well but they have some terrible side effects. The most hated side effect is insatiable hunger, and the resulting weight gain. If you need them, they can totally change the game for you. Last but not least are immunosuppressant’s. These are the heavy hitters. These drugs suppress the immune system, and therefore, hopefully, they suppress your immune system from attacking itself. These drugs tend to have more dangerous side effects and increase your risk of infection.

That’s all, folks! Thanks so much for reading; I hope that you learned something that helps you or someone you care about.

If you would like to purchase a purple personalized awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/purple-awareness-ribbon-pin-personalized?rq=lupus

#worldlupusday #autoimmune #autoimmunedisease #butterflyrash #jointpain #chemo #steroids #lhandsign #lupusawarenessmonth #lupussucks #chronicillness #chronicpain #invisibleillness #invisibledisability #awareness #awarenessribbons #advocacy #cancerribbons #lupus