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Cause Awareness Blog | Support the Struggle | Personalized Cause

Our cause awareness blog provides knowledge and educational information to advocate for cancer, medical, social and psychological illnesses and/or causes. 

Lupus Awareness Month

Davis Orr

Lupus Awareness Month

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. ;)

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