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).
- 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:
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