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Filtering by Tag: lupus

Juvenile Arthritis Awareness Month

Davis Orr

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July is Juvenile Arthritis Awareness Month!

It’s that time again! Welcome back, friends, thanks for joining me today for another awareness blog entry. I hope you’ve all had a wonderful week since our last post. This week’s topic is Juvenile Arthritis, in honor of Juvenile Arthritis Awareness Month. I’m sure you’ve all heard of arthritis. At some point, we all develop a little arthritis in our joints as we age from use. But, there are many different types of arthritis, and most of them have nothing to do with aging. Juvenile arthritis, in particular, affects children under the age of 16, which clearly isn’t related to again at all. So, today we’re going to discuss juvenile arthritis, and the numerous different types of arthritis under that umbrella. All aboard the juvenile arthritis information express, we’re leaving the station.

Juvenile arthritis is an autoimmune disease that affects children under the age of 16. Juvenile arthritis occurs in the joints, more specifically it affects the synovium in the joints. Synovium is the tissue within the joints. Autoimmune disease cause inflammation. With juvenile arthritis, the inflammation occurs in the synovium. Autoimmune diseases are a classification of diseases in which the body’s immune system begins to malfunction and attack itself. Each autoimmune disease acts differently, the the one thing they all have in common is that the body has mistakenly begun to attack itself, which leads to inflammation. Consistent inflammation can cause serious damage to the area it occurs in. If inflammation is not treated, the area it occurs in will slowly become more and more damaged and may eventually lose function all together. In a healthy body, the immune system is responsible for fighting off anything that may harm the body, such as bacteria or viruses, or other kinds of illnesses. With autoimmune diseases, the body gets it’s signals crossed and begins to fight off it’s own healthy cells. Like most other autoimmune diseases, juvenile arthritis is idiopathic. Idiopathic means that there is no precise cause. Even though there is no apparent cause for most autoimmune diseases, it is pretty much accepted that it may have something to do with genetics, environmental triggers, or specific infections/illnesses.

There are quite a few different types of juvenile arthritis, five types to be exact. Each type affects the body differently. The five different types of juvenile arthritis are called systemic juvenile arthritis (also referred to as Still’s disease), oligoarthritis (also referred to as pauciarticular juvenile rheumatoid arthritis), polyarthritis (also referred to as polyarticular juvenile idiopathic arthritis or pJIA), psoriatic arthritis, and enthesitis-related arthritis. Let’s talk about each one in a little detail.

Systemic arthritis, also known as Still’s disease, affects the whole body. Each different kind of juvenile arthritis affects the body differently. With systemic arthritis, the entire body may be involved, and may also involve internal organs. Systemic juvenile arthritis is usually accompanied by two seemingly ordinary symptoms, which are a high fever and a rash. This rash usually appears on the legs, arms, or trunk of the body (basically anywhere from the neck down). Typically, when there is internal organ involvement, it affects the lymph nodes, spleen, liver or heart. Unlike other forms of juvenile arthritis, this type does not affect the eyes, usually.

Oligoarthritis, also referred to as pauciaticular juvenile rheumatoid arthritis, is unique in the sense that children usually outgrow this disease. With this form of juvenile arthritis, diagnosis requires counting how many joints are affected in the first six months of disease activity. If less than five joints are affected, along with other diagnosis factors, then it’s oligoarthritis. The joints that are most frequently affected are the knee, wrist or ankle. It can also affect the eyes, usually the iris. For some reason, this type of juvenile arthritis occurs in girls more than boys.

Polyarthritis, also referred to as polyarticular juvenile idiopathic arthritis, is most like the kind of rheumatoid arthritis that adults experience. This type of juvenile arthritis is kind of the more advanced version of oligoarthritis. With polyarthritis, more than five joints are affected in the first six months of disease activity, along with other diagnosis factors. Polyarthritis tends to have an element of symmetry to it, meaning that if a joint on one side is affected, then usually it’s corresponding joint on the other side of the body is also affected. Often, the neck, jaw, hands, and feet are affected. This form is also more common in girls than boys.

Psoriatic arthritis is associated with the skin disorder psoriasis. Either psoriasis or arthritis may occur before one another. Sometimes, it may not appear until years after the first diagnosis of either psoriasis or arthritis. Pitted fingernails are associated with psoriatic arthritis.

Enthesitis-related arthritis is the last of the five types of juvenile arthritis. Enthesitis-related arthritis affects the entheses. Entheses are the parts of the body where the tendons attach to the bone, for example the hips. The parts of the body that are frequently affected are the spine, hips, and eyes. This type of juvenile arthritis is more common in boys, especially boys with male relatives who suffer from ankylosing spondylitis. Enthesitis-related arthritis is typically diagnosed in boys over eight years old.

Now that we’ve done a quick rundown of the five different types of juvenile arthritis, let’s talk about the symptoms that may indicate the disease. It’s important to note that in some cases, a child may not experience any symptoms at all, but can still have juvenile arthritis. So, obviously, the big symptom is joint involvement. Joints may be stiff, particularly right after waking up. Joints may be painful, tender or swollen. Sometimes, the younger children will appear to have difficulty with recently learned motor skills such as walking, but it may actually be a limp due to the joints being affected. Some forms of juvenile arthritis are accompanied by a high fever and rash, as discussed above in the corresponding type of juvenile arthritis. Fatigue is also a common symptom amongst children with juvenile arthritis. Fatigue is often accompanied by irritability, not surprisingly. Sometimes, weight loss can occur. There can also be eye involvement, such as blurry vision, pain in the eyes, or red eyes. Juvenile arthritis can be tricky to diagnose at times because many symptoms mimic other diseases, and sometimes children do not show any symptoms at all. There is no specific test that can confirm whether a child has juvenile arthritis or not, and so diagnosis can sometimes take a very long time. With juvenile arthritis, diagnosis is basically a process of elimination. Eliminating all other possible causes can be time consuming and may involve many trips to the hospital and many blood tests. Doctors will want to rule out cancer, fibromyalgia, lupus, Lyme disease, infections, viruses, and other causes that have similar symptoms.

Treatment for juvenile arthritis varies depending on the type. Medications and exercise are typically used to treat all forms. The kind of exercise may depend on the severity of symptoms, or the type of juvenile arthritis. Polyarticular juvenile arthritis carries a higher risk of joint damage, and so water based exercises and physical therapy may be used. Medications for juvenile arthritis have four objectives. Those objectives are to reduce inflammation, ease and prevent pain, prevent joint damage, and maintain or increase strength and flexibility. Some cases may require more aggressive treatments.

If you’re new to our awareness blog, welcome! I’m so glad you found us. This awareness blog is run by Personalized Cause. Personalized Cause is an awareness accessory company that specializes is custom awareness ribbons. Our custom awareness ribbons can be engraved with any name, date, message, or phrase that you’d like, on any of our custom awareness ribbon colors. We carry just about every awareness ribbon under the sun. In addition to our custom awareness ribbons, we also carry classic awareness ribbons, fabric awareness ribbons, and silicone awareness wristbands. Basically, whatever your awareness accessory needs are, we’ve got you covered.

Personalized Cause decided to start this awareness blog because we believe in raising awareness. We decided to practice what we preach by raising awareness for as many causes as we can. We can’t expect our customers to be passionate about raising awareness if we’re not, and raising awareness is crucial for understanding, fundraising, and research. We hope to educate everyone on different causes so that progress is made in our communities. Compassion and understanding are the key to every cause. Personalized Cause believes in the power of awareness, which is why we’ve started this awareness blog. Our mission is to help you raise awareness for causes close to your heart with our line of awareness products, but also to raise awareness for as many causes as possible on our own. We strive to create a community of educated and compassionate people, while also calling attention to causes that may be unknown or misunderstood. So, I hope you’ll join us next week, and every week after, for our latest awareness blog installment.

Blue awareness ribbons are used to raise awareness for juvenile arthritis. To order a custom blue awareness ribbon for juvenile arthritis, visit:

#juvenilearthritis #arthritis #juvenile #lupus #fibromyalgia #scleroderma #awareness #awarenessblog #cancerribbons #awarenessribbons #jia #chronicillness #autoimmune

Invisible Illness Awareness

Davis Orr

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Here's a little Invisible Illnesses Awareness to kick off your weekend!

Oh my gosh, you guys… I’m excited for today’s awareness blog post. I’ve received quite a few emails since my post two weeks ago about chronic illness and my synopsis of Spoon Theory. To be completely open with you all, it was a really important blog entry for me to write as someone who falls into the #spoonie category. Like many of you, I have struggled to find the words to accurately explain what chronic illness feels like to friends and family. When I found Spoon Theory, it was like all the sudden everything clicked. It’s powerful to be able to feel so represented by another person’s experience, and I was so grateful to finally have something to forward to people that captured the essence of the daily struggle. Finding the words to explain my chronic illness was difficult until I found Spoon Theory, and finding the #spoonie community was a complete game-changer. When you’re deal with multiple diagnosis, and rare conditions or abnormal presentations of illnesses, it can start to feel like you’re some kind of one-in-a-million freak. One of the greatest comforts I have found in the #spoonie community is that I’m really not that special. That sounds like a negative thing, but it’s actually very liberating to feel like there’s a group of people out there who are all just like you. You’re not the only weirdo, there’s actually a whole bunch of you. It makes the world suddenly less lonely, your conditions less scary, and it allows us to feel understood without explanation, finally. So, today’s awareness blog entry is going to expand on the chronic illness topic, because I see that it has connected with a lot of you.

Today we’re gonna talk about invisible illnesses/invisible disabilities. A huge chunk of the chronic illness community is suffering from an invisible illness or invisible disability. Invisible illness can sometimes be more difficult to deal with socially, because you get a lot of people who don’t take you seriously since, “you don’t look sick.” Not “looking sick” can be a double-edged sword. On the one hand, it’s nice that you can pass as a healthy person. It gives you a certain sense of freedom to be able to choose with whom you share your story, because others will not recognize that you are sick. There’s kind of a luxury to being able to go back and forth between the realm of the healthy and the realm of the chronically ill. It’s kind of like being a spy. You have a double life. On the other hand, it can make things much more difficult. In my own experience, I have had to convince people that I was actually sick. People assume that you are either weak or exaggerating since there are no physical signs that you are suffering. Another really fun assumption that people make about you is that you’re not experiencing fatigue, you’re just lazy. Even doctors, who should know better, sometimes don’t believe you. It’s pretty sucky to have to prove that you’re a member of a club that you don’t want to belong to in the first place (chronic illness/invisible illness being the club).

I’ll quickly share a personal story, which I don’t normally do, but it illustrates the issue. A couple months after I got my license, I decided to drive down to the coffee shop with my brother. I had been very sick and hospitalized off and on for months before that. Going to the coffee shop was a big outing for me at the time, sadly. I had a handicapped placard, which I needed. When I got there, I parked in a handicapped spot. There were a couple other handicapped spots open, but the regular spots were all full. When my brother and I got out of the car, a group of older people (seniors) started loudly talking to each other about me, essentially calling me a disrespectful teenage dirtbag (I was an honor roll kid, not a thug). As we got closer to them, one of the women started shaking her head at me in disgust, and said, “You know you can get a ticket for that, I should call the police.” I was completely frozen. I was so shocked that this group of adults was shaming me, and I didn’t know how to react. I was so full or rage and scared at the same time. What if the police came and didn’t believe me either? My brother looked at the woman and said, “She needs to park there.” I was relieved he said something because I didn’t know what to say. The woman then said, “She sure doesn’t look sick,” to which I replied, “thank you,” and walked inside. I could see that my response made her recognize that she had been wrong. The group quickly left before we came back out. This may not sound like that big of a deal, but there have been hundreds of situations like this in my life. Let me tell you, over time it fills you with anger and anxiety, and makes you defensive by default. It sucks to have to explain yourself to strangers that don’t deserve to know anything about you. It sucks to be judged by people who assume you’re a crappy person when you encounter them, while just trying to live your life. This is just one example of a scenario that people with invisible disabilities face constantly. It’s why this awareness blog is so important to me.

Enough about me, let’s get clinical. Invisible disabilities are usually caused by chronic illnesses. Having an invisible disability means that your normal daily activities are significantly impaired. Wanna hear a surprising statistic? Something like 96% of people living with a chronic illness do not have any outward signs that indicate that they are sick. That’s a gigantic number of people who are living with invisible illnesses. About 10% of people with a chronic illness are considered to be disabled from it. Invisible illness can be defined as a mental, physical, or neurological condition that impairs the person’s ability to move, affects their senses, or inhibits their ability to perform daily activities, that is not readily apparent to an onlooker. Having an invisible disability does not necessarily make the person disabled. That is an important distinction because sometimes people with invisible disabilities can often still work, maybe part time, or with accommodations. Sometimes the disability will improve and sometimes its severity will wax and wane. Each person’s unique invisible disability will affect them differently. So, just because you know one person with MS who was able to go back to work, doesn’t mean another person with MS struggling with an invisible disability will be able to. Many people with invisible disabilities are still active, and maintain involvement with their family and friends, even hobbies or sports.

Invisible disability symptoms can be chronic pain, chronic fatigue, cognitive impairments, or cognitive dysfunction, weakness or dizziness, brain injuries, mental health disorders, learning disabilities, hearing or visual impairment, and the list goes on. One of the major struggles for people with invisible disabilities is that people tend to have higher expectations of them because they cannot see, or forget that the disability exists. As a result, there are often issues with miscommunications, misconceptions, and misunderstandings. Never judge a person by what they look like. A person may look like they are unable to do something, when they are actually completely capable of it. Likewise, a person who may look capable of something may not be. Disability does not depend on outward appearance. Remember that.

Thanks for reading! I hope this unusually personal awareness blog entry helped to shed light on what it can be like for people living with invisible illnesses or invisible disabilities. I hope that some of you feel like I captured an important aspect of life with chronic illness well, and accurately. Feel free to send me an email about it. =)

See you all next week!

If you’re a first time reader, let me take a minute to tell you a little bit about ourselves and why we started this awareness blog. We are Personalized Cause, an awareness accessory company specializing in custom awareness ribbons. Custom awareness ribbons are a unique product that allow our customers to personalize their awareness ribbons with any name, date or message they want. Custom awareness ribbons come in all colors, and are engraved with your choice of personalization. Custom awareness ribbons are a wonderful way to express support when you may not know what to say. Awareness ribbons are a powerful symbol of hope and inspiration to others, as well as the person wearing it.

At Personalized Cause, we believe in the power of awareness. We have seen how one custom awareness ribbon can impact an entire community, and create a culture of compassion and understanding. Raising awareness is our mission. Only through raising awareness do we make progress in funding, research, and cures. We want to empower you, through our awareness products, to become an advocate for yourself or others. We use our awareness blog as a way to educate people about health issues that affect millions of people, in hopes that it may help them to recognize symptoms and prevent illness. We hope you’ll come back next week for our next awareness blog entry.

Invisible illness is represented by a peach awareness ribbon. To order a custom peach awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/peach-awareness-ribbon-pin-personalized?rq=invisible%20

#invisibledisability #chronicillness #chronicpain #chronicfatigue #spoonie #spoonielife #invisibleillness #awareness #awarenessribbon #awarenessribbons #cancerribbons

Chronic Illness and "Spoon Theory"

Davis Orr

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In honor of all the chronic illnesses that we raise awareness for in the month of May, let's address the question: What is a spoonie?

Hey, there! So glad you stopped by, friends! Hope everyone had a wonderful weekend. I trust it was full of some quality R&R, and maybe a little bit of throwing caution to the wind. We all need that every now and then, especially with all this gloomy weather and summer right around the corner. This is always the hardest part of the year for me because it seems to take the longest. Must be all the anticipation of warm nights and not having to wear two pairs of socks to sleep to keep warm. That, and I’ve got some dresses I’m dying to wear. But, enough about me…

Today’s awareness blog topic was chosen after we received a few emails asking us about our “Spoonie” pin, featured of our home page. If you’re active in the online chronic illness groups on social media, I’m sure you’ve noticed the hashtag “#spoonie” used pretty often in reference to chronic illness. I know that when I first got involved with Personalized Cause, I was unfamiliar with the term and seemed to see it pop up everywhere like some kind of inside joke everyone was in on besides me. But, after doing a lot of digging on the interwebs, I was able to find the original article that the hashtag was born from. So, today, I’m going to explain Spoon Theory to you guys, so that we are all in on the joke. That way all my chronic illness people out there can start using is with reckless abandon, without having to guess if they are using it correctly.

First, let’s talk a little bit about chronic illness, since understanding chronic illness is key for understanding Spoon Theory. So, what exactly qualifies as a chronic illness? Excellent question! There are a lot of misconceptions about what defines someone’s health struggle as a chronic illness. I’ve heard people say that an illness is only considered a chronic illness if you become disabled from it. That could not be farther from the truth. I’ve heard people dismiss symptoms of chronic illness and blame their inability to do something on being lazy because “they look fine.” This is a common stigma people with chronic illness face. Often times, people who don’t understand what it’s like to deal with a lifelong health struggle can be dismissive, belittling, and trivializing. People who suffer from chronic illness deal with sometimes debilitating fatigue. It is physically draining for your body to constantly be fighting to maintain and function. It costs way more energy for someone with a chronic illness to complete daily tasks than a healthy person when their disease is active. Unfortunately, people who don’t have a chronic illness themselves don’t always understand this. As the saying goes, “people don’t get it, until they get it,” meaning that the only way for someone to understand what it’s like to have a chronic illness is for them to experience it themselves.

A chronic illness is defined as a disease that is ongoing for over three months. The reality of the situation is that most chronic illnesses last a lot longer than just a few months. Most chronic illnesses are lifelong struggles, or may come and go in episodes, or flare-ups. Because it can be discouraging, upsetting and exhausting to deal with a chronic illness, one of the most commonly experienced complications is depression. A huge percentage of those suffering from a chronic illness also struggle with chronic depression due to the stress and anxiety, or even anger caused by a health issue. It is important to treat the depression on it’s own, and not just hope that by treating the chronic illness, the depression will be treated as well. People can continue to struggle with the depression brought on by chronic illness even after they are feeling better. Some examples of chronic illnesses are things like cancer, asthma, autoimmune diseases, diabetes, HIV/AIDS, COPD, hepatitis, etc. The list goes on and on.

Chronic illnesses usually cannot be cured (with some exceptions), but can be managed with appropriate treatments and lifestyle changes. Sometimes people experience long periods without disease activity, and some people are never completely symptom free. Each chronic illness is very unique in how it affects the person who has it. Chronic illness can be extremely overwhelming, and may make some people unable to work, or even care for themselves. People often make the mistake that people who have a chronic illness but look healthy are fine. Looking healthy and being healthy do not necessarily come as a package deal. The former can certainly occur without the latter. Just remember that you don’t know what it took for that person to appear healthy. They may have spent hours trying to achieve that, whereas others can just wake up looking that way. People who have chronic illnesses can experience chronic fatigue, chronic pain, disability, insomnia, and more, which all drain their energy.

Now that we all understand a little more about chronic illness, I think we can get to Spoon Theory. I’ll include the link to the original article by Christine Miserandino at the bottom of this post.

The article starts out by setting the scene. The author describes the moments leading up to the origination of the spoon theory. She was a normal college girl, with her roommate, eating fries at a diner and chatting about this and that when suddenly her roommate asked her what it felt like to have lupus. Her roommate had watched her live with the disease for quite some time, and so she had assumed that she understood the ins and outs of the disease. But that wasn’t exactly what she meant. She wasn’t curious about what lupus was and the symptoms it caused, rather, she was asking what it felt like to be Christine- a person battling a chronic illness. People with chronic illnesses get this question a lot. It’s very difficult to put into words what it feels like to be sick. It’s even difficult to find the words in your own mind. Nothing quite describes it, and you’re left with an answer that’s as close as you could come. When I was younger, I used to try to practice explaining what chronic illness felt like, so that when my friends asked I could answer them accurately. I was never able to formulate a sentence that really embodied the experience. And so, like Catherine, I would try to invent metaphors for it.

Catherine’s metaphor of living with chronic illness was inspired by her surroundings at that diner; she grabbed as many spoons as she could from the surrounding tables and handed them all to her roommate, proclaiming, “Here you go, you have lupus.” The difference between a healthy person and a person living with chronic illness is represented by this spoon metaphor. Healthy people have a limitless supply of spoons; someone suffering from a chronic illness has a finite supply. When you have a disease like lupus, everything you do must be deliberate. You have to be meticulous with the way you do things, in order to get through the day. You have to choose what to spend your energy on in order to get through as many things as you can. The spoons represent the energy required to perform a task. Say you have 12 spoons of energy, and you have a normal day of college ahead of you. How do you spend those 12 spoons in order to make it to school; Keep in mind, everything costs something. What do you forfeit? Getting out of bed, that’s one spoon. Taking a shower, that’s another spoon, if not two. Getting dressed, another spoon. Brushing your teeth, spoon. Putting on makeup, spoon. Making breakfast, spoon. It adds up so much quicker than you think.

It all came down to this one last task for the day: dinner. If she made dinner herself, there wouldn’t be enough spoons for her to clean up, and if she went to pick something up, she may not have enough spoons to drive home. This little example is actually a very accurate dilemma for someone with a chronic illness. So, what do you do? You grab something out of the fridge, and heat it up. That’s all you can afford with your remaining spoons. From day to day, the number of spoons you start out with may go up a little or down a little, but it’s relatively constant. The takeaway of spoon theory is this: you cannot do everything you want to do; you have to choose, everyday, what to spend your spoons on. The people who face this daily struggle have adopted the term “spoonie” as a nickname for chronic illness sufferers.

I highly recommend you check out the original article. It’s a quick read, and Christine does a wonderful job of conveying the frustration people with chronic illness feel. I hope that helped to quickly explain Spoon Theory in a way that’s easy for people without chronic illness to understand.

And with that, I’ll wrap it up. If you’re a new reader, please read the last paragraph, or so, so that I can explain who we are and why we’ve started this awareness blog. Veteran readers, catch you next time, I hope you enjoyed today’s post.

Personalized Cause is an awareness accessory company based in California. We specialize in custom awareness ribbons. We are the only company that offers customers the option to personalize any color awareness ribbon they choose. Custom awareness ribbons can be personalized with a name, date, phrase, or message. Our custom awareness ribbons are engraved on cloisonné awareness ribbon pins. They are a beautiful way to support a loved one, or advocate for a cause. If custom awareness ribbons aren’t your thing, we also carry classic awareness ribbons, fabric awareness ribbons and silicone awareness wristbands.

We started this awareness blog because we believe in the power of awareness. We believe that educating people can save lives, and that prevention is the most important way to protect your health. We also know that not everything can be prevented, and we want to help inform our readers about warning signs and symptoms of lots of different illnesses, so that they can recognize a problem early on. Early detection is so important to having the best possible outcome. So, if you’re interested in learning a little something every week, and becoming a more aware human, check out our weekly blog.

Light blue awareness ribbons are used to raise awareness for chronic illness. To order a custom light blue awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/light-blue-awareness-pin-personalized?rq=chronic%20illness

Also, here’s the link to the Spoon Theory article by Christine Miserandino:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

#chronicillness #invisibleillness #lymedisease #lupus #fibromyalgia #chronicfatigue #arthritis #ulcerativecolitis #crohnsdisease #celiacdiease #spoonie #autoimmune #diabetes #cancer #depression #HIV #AIDS #hepatitas #COPD #awareness #cancerribbon #awarenessribbon #chronicpain

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