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Rare Diseases Are More Common Than You Thought - Celebrate Rare Disease Day!

Davis Orr

Rare Diseases Are More Common Than You Thought - Celebrate Rare Disease Day!

Hey guys! Me again. I know it’s been awhile, but I’m back with a new blog for all our wonderful readers. Today I’m going to talk about a subject that is near and dear to heart because I am a member of this community. So without keeping you guys all biting your nails in suspense, today we’re going to talk about RARE DISEASES in honor of RARE DISEASE DAY!

There is a saying in the medical community, and a rule by which most doctors live, and it goes like this: “If you hear hoof beats, think horses not zebras.” This is what is known as Occam’s Razor. Occam’s Razor is a theory that basically states that the simplest answer is usually the correct one. The majority of the time, this is not only a logical rule to live by but also a practical and responsible one. If my box of Girl Scout cookies suddenly disappears, it was probably my husband, not a thief that broke in and stole only a box of Thin Mints. This way of thinking helps doctors make healthcare decisions. Rather than exposing a patient to painful and invasive diagnostic tests that are likely unnecessary, they look at the most probable source of the issue and limit their testing to that, saving the patient both time and money. Makes sense, right? The problem is that every now and then, those hoof beats are actually made by a zebra instead of a horse. For those patients, Occam’s Razor is a hindrance to their diagnosis and treatment.

This age-old saying was the source of inspiration for the rare disease awareness ribbon. Rare disease patients have affectionately adopted and appropriated zebra stripes to represent their cause.

Rare Diseases

Talking about rare diseases is so important for so many reasons. For starters, rare diseases get the least attention… from everyone, including the medical community and drug manufacturers. It’s not that people actively ignore rare diseases, it’s just that most people have either never heard of the conditions, or don’t understand them. Even most doctors do not usually see cases of even the more common rare diseases. A physician may go their entire career having never seen or heard of some of the diseases classified as rare diseases. This is especially problematic when trying to gain visibility in the rare disease community. It can be very difficult to raise awareness and raise money to support a cause that nobody has ever heard of. As you can imagine, it is hard to find support for a disease that has no celebrity spokesperson and a very small market for drug manufacturers. Not to mention that most people have never and will never be personally affected by it.

This sadly leaves many patients with rare diseases in a difficult position. Not only is it difficult to discover the correct diagnosis, but even with the diagnosis treatment options can be limited because of the lack of research and development invested into creating drugs to treat the disease. After you have overcome all of those issues, patients can still suffer because of the lack of experience their doctor has in treating that condition. There are so many obstacles like the ones described that rare disease patients face in their personal health journey.

So what is a rare disease, and what’s the deal with rare disease day? I’m glad you asked. Let me break it down for you.

First off, let’s talk about what rare diseases are. Obviously, they are diseases that are rare. I know you didn’t need me to figure that out. But what are the qualifications for a rare disease?

In the United States, a rare disease is considered any disease that affects less than 200,000 people. That sounds like a lot, but when you consider the fact that there are over 325 million people in the U.S., it really isn’t very many at all. There are somewhere around 7,000 rare diseases. With over 7,000 different kinds of rare diseases, it’s no wonder that it’s so hard for people to get their diagnosis. Can you imagine having to memorize 7,000 different rare diseases in med school that you were likely to never encounter? That would be nuts. Nobody would ever get through med school.

Doctors get a general overview of everything and then focus their time on the diseases they are most likely to be presented with. This is why it has fallen to the patients themselves to become advocates and raise awareness for rare diseases. But here’s the interesting part: Because there are around 7,000 different kinds of rare diseases, the number of people in the population who have been diagnosed with one is actually pretty high. It is estimated that around 1 in 10 people in the United States has a rare disease. 50% of rare disease patients are children. So, here we are… with this huge population of people who are unrepresented or underrepresented in the mainstream medical community. All these people want is a correct diagnosis, a good doctor, and some medicines to treat the disease. Yet it is a struggle to get all three. This is especially true for children who cannot articulate their symptoms well and cannot advocate for themselves. (Disclaimer: statistics vary by country.)

You can find our extensive list of Rare Diseases and Genetic Disorders HERE.

Rare Diseases and Genetic Diseases - Zebra VS. Blue Jeans

Many rare diseases are also considered genetic diseases. This has created a great deal of confusion when it comes to the appropriate awareness ribbon color. Should you pick the zebra awareness ribbon for rare diseases or the blue jeans awareness ribbon for genetic diseases? This comes up a lot. The truth is that you can use whichever awareness ribbon you prefer, but if you’d like to find the awareness ribbon category your disease falls under CLICK HERE. Around 80% of rare diseases are genetic.

Some rare diseases have organizations that have been able to raise enough awareness to be more visible than others. These diseases typically have their own special awareness ribbon outside of the zebra awareness ribbon. They have become the bigger fish in the small pond (assuming 7,000 fish can be considered a small pond. To be honest, I’m not really sure about the average number of fish in different sized ponds, so please forgive me if I’m wrong and focus on the metaphor.) Personalized Cause is currently working on the most extensive list ever of all diseases and the corresponding awareness ribbon colors for that cause. You can find the Rare Disease Master List HERE.

I bring this up for a couple reasons. Reason One: Raising awareness for each of these diseases is crucial in being able to treat and potentially cure them. It is also likely that a lot of these diseases could have shared treatments, and understanding one may lead to a breakthrough in another. It’s a “one for all, and all for one” situation. Reason Two: An awareness ribbon is a surprisingly powerful way to do that. You’d be surprised how many communities have been educated by one person with a ribbon who’s willing to become an advocate. On that same note, people tend to really empathize with a cause when they can put a name or face to it. People are generally good. They want to help. But it’s hard to become invested in a cause that you don’t understand when you can’t imagine the people affected by it. Personalized awareness ribbons are a great way to overcome that. CLICK HERE to see our personalized awareness ribbon "Pin-stagram" gallery.

Rare Disease Day

Another way the rare disease community raises awareness is with Rare Disease Day. Rare Disease Day is held annually on February 28. Everyone under the rare disease umbrella comes together to raise awareness, share their stories and wisdom, tips and tricks, and raise money for research and development to advance treatment options for patients.

Fun fact about Rare Disease Day: As I mentioned earlier, Rare Disease Day is held every year on February 28th. February 28th was chosen for a very specific reason. February 28th is the last day of February… most of the time. The first ever Rare Disease Day was held in 2008 on February 29th, also known as leap day. They held Rare Disease Day on a day that only comes around every 4 years, in other words a rare day. Since then, Rare Disease Day has been celebrated on the last day of February, which is usually the 28th. The next Rare Disease Day to take place on February 29th will be in 2020. Mark your calendars!

Rare Disease Day was created by EURODIS and began in Europe. The United States joined EURODIS in celebrating Rare Disease Day the following year. It has since become a worldwide event with over 90 countries participating. Every year Rare Disease Day events and media reach hundreds of thousands of people, which is a major win in the battle to raise awareness.

Participating in Rare Disease Day

There are lots of things you can do to participate in Rare Disease Day. Patients and individuals can sign up to host an event to raise awareness or a fundraiser. Remember the ice bucket challenge? Well, Rare Disease Day has a similar viral campaign. People participating in Rare Disease Day paint their faces and post photos of themselves on their social media accounts, using the hashtags #RareDiseaseDay and #ShowYourRare. This face paint social media campaign is a way to show support, raise awareness, and share your story. You can also upload your photo directly to their website, which is a really cool way to share your health journey with others who may find similarities and hope in your experience.

Click here to visit rarediseaseday.org.

Raise Awareness for Rare Diseases - Be an Advocate!

Sharing your story can have a huge impact on the people who identify with your story. When I was young, somebody told me that I should be open about my health and my journey because you never know how much someone may need to hear what you have to say. It always stuck with me. As I got older, I realized how true it was. There have been a handful of moments in my life when somebody said something that resonated so deeply within me that it actually changed my perspective and my life. They weren’t even anything particularly insightful. They just happened to be what I needed to hear at that moment to feel validated and inspired.

Becoming an advocate is making the decision to put yourself out there in hopes that you may help others. Being an advocate can be on a personal level, by educating those around you, or on a public level, by sharing your story with the world. There is no wrong way to advocate for yourself and others. I encourage everyone on a personal health journey to share your story. The benefits are far-reaching, for you and for people you may not even know. Nothing will make you feel more supported, reassured, and understood than talking to a community of people who have dealt with something similar. And, like I said, you never know how your words may impact someone else.

On that note, I’m going to wrap up today’s blog. I’d like to leave you with a quote that I stumbled across on the Global Genes website, which is an organization for genetic diseases, many of which are rare diseases.

“When “I” is replaced by “we” even illness becomes wellness.” -Sushan R. Sharma

Stay Out of the Sun Day

Davis Orr

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Today is Stay Out of the Sun Day!

Hey guys! Thanks for stopping by for this week’s awareness blog entry! Today is a particularly relevant topic, especially considering the holiday tomorrow. I hope you’ve all enjoyed your week. I’m sure you’re all dying to get through the day so you can enjoy your mid week day off to celebrate the Fourth of July. I cannot wait! I think this year is gonna be the best Fourth of July yet, since I’ve got lots of secret things planned for a certain someone special’s 30th birthday. Can’t divulge more cause it’ll ruin the surprise, but I’ll fill you all in next week. Anyway, today’s post has a lot to do with tomorrow. Today is Stay Out of the Sun Day! Stay Out of the Sun Day is celebrated every year on July third, as a reminder to protect your self from the harmful effects of the sun. People tend to spend all day on the Fourth of July having fun outside barbequing, playing games, working on a base coat, and enjoying a few ice cold drinks. So, the day before the Fourth, remember to include sun protection in your plans for holiday celebrations.

So, the sun… It’s a great thing. Without the sun we wouldn’t even be here, so before I start bashing the sun for all it’s harmful effects, I just want to point out that I am generally in favor of its’ existence. I also realize that there are benefits to sun exposure, such as vitamin D and it certainly does do wonders for your mood if you suffer from SAD (seasonal affective disorder). There are some undeniable draw backs to basking in the sun, too, though, and today were going to discuss that so that we know exactly what we need to protect ourselves from. Hint: it’s mainly skin related. But skin is important! It’s your body’s largest organ, and it keeps all your tissues and organs protected, so we really should do the best we can to protect it.

In many parts of the world, like the United States, we perceive a bronze glow as a signifier of health and youth. In reality, creating that tan and maintaining that tone is the opposite of healthy. Unprotected exposure to the sun, or even the use of tanning beds, is one of the worst things you can do for your skin. Sun exposure causes skin cancer and premature again. In fact, most of what people consider to be the natural effects of aging on the skin are actually a result of sun exposure. This is because people are generally exposed to the sun consistently throughout their lives. The more time you’ve been exposed, the more you will develop those signs of age. They should really be considered signs of sun exposure rather than signs of aging, actually. Now, I’m in no way saying everyone should avoid the sun because it’ll make you look old. First off, you’ll eventually look old no matter what. Don’t think that you can ever completely avoid aging. Second, getting older is a wonderful thing and it shouldn’t be treated as some kind of dirty word or something to be afraid of. Enjoy your life! Just be smart about your sun exposure.

The sun emits ultraviolet rays, also referred to as UV rays. Ultraviolet rays slowly destroy elastin, which are little fibers found in the skin that are responsible for elasticity. As the elastin is damaged through exposure to UV rays, the fibers begin to break down and eventually, the skin will develop wrinkles and sag, while also causing the skin to become thinner. When the skin thins, it is easier for it to bruise and tear, and it also makes it more difficult for the skin to repair itself and heal from these bruises and tears. The damage done to your skin from sun exposure usually does not become apparent until many many, years later, so people sometimes don’t realize how harmful their sun exposure habits are until significant damage has already been done.

The most dangerous consequence of sun exposure is skin cancer. People tend to have a less concerned attitude towards skin cancer for some reason. It may be because they believe that they will see it before it develops into something life threatening, or because people think that if they do develop skin cancer you just have the dermatologist remove it and you’re cured. Neither of those things is exactly true. For starters, no person can be one hundred percent certain of everything going on with their skin. Usually, people only notice something after something has obviously changed, and there are plenty of places that we can’t see. As far as removal goes, yes you can have skin cancer removed, but it can spread and become much more serious before you realize it’s there. Not to mention that skin cancer removal leaves a sometimes nasty scar, and considering that skin cancer often occurs in the places that are exposed to the sun the most (for example the side of your face that the sun hits when you’re driving), that’s something that you might want to avoid.

Skin cancer is one of the most common cancers in America, but it’s also one of the easiest cancers to prevent with appropriate sun protection. Skin cancer occurs when abnormal skin cells begin growing at an out of control rate. These abnormal cells reproduce until they become a tumor. A tumor can either be cancerous, or non cancerous. Noncancerous tumors are called benign tumors, and cancerous tumors are called malignant tumors. There are three kinds of skin cancer, basal cell carcinoma, squamous cell carcinoma, and melanoma.

There is a list of criteria for helping people evaluate any changes on their skin to determine whether or not something may be melanoma. The trick to remembering the criteria is as simple as the first handful of letters of the alphabet. It’s called the ABCDE rule. The A in the ABCDE rule stands for asymmetry. This means that the growth is not symmetrical on both sides. If one half does not match the other, then it is asymmetrical. The B stands for borders. If the growth has irregular borders, meaning that the edges seem undefined, blurry, or not a smooth line, then you should get it looked at. The C stands for color. The color of melanoma may resemble something like the color of a mole, but it may also be many other colors, especially when the shades of color are uneven. If the growth is brown, black, tan, red, white or blue with some parts light or darker than the rest, you should get it checked out. The D stands for diameter. Anything larger than the size of a pencil eraser needs to be evaluated by a doctor, ASAP. Any mole that has suddenly changed shape or grown in circumference should be brought to your doctor’s attention. Lastly, the E stands for evolving. Any mole or growth that is changing needs to be looked at by a doctor. Those changes can be related to the color, size or shape of the mole or growth.

Skin cancer is generally diagnosed through a biopsy, which is when the doctor removes part of the growth and sends it to a lab to be analyzed for presence of cancer. If the biopsy comes back positive for cancer, aka malignant, then the doctor will develop a strategy for treating it. Skin cancer treatment is determined by a few factors, and treatment is personalized to meet the specific needs of that particular skin cancer. Depending on the type of skin cancer, there may be some fairly non-invasive treatment options. Aggressive skin cancers will require aggressive treatment.

Remember, it’s never too late to start protecting yourself from sun exposure. You may think that the damage is done, and that there’s no point in sunscreen or hats now, but you’re wrong. Even though skin can never completely recover from skin damage, continuous and vigilant sun protection measures can allow the skin to improve over time. There are all kinds of sunscreens now for whatever your particular needs may be. For example, I am acne prone with oily skin, despite being nearly 30, and regular sunscreen clogs my pores and makes me break out. That used to discourage me from wearing any sunscreen at all. Considering how fair I am, that was extra stupid. I recently found a sunscreen spray that I can spray over makeup, and it has totally changed the game for me. So, whatever your particular needs, don’t let anything stop you from continuing the search for one that works for you. You’ll thank yourself later!

That’s all, folks! Catch you next week!

If you’re a first time reader, let me welcome you to the Personalized Cause awareness blog! Personalized Cause is an awareness accessory brand located in California that specializes in custom awareness ribbons. Custom awareness ribbons allow customers the ability to engrave any text they choose onto the awareness ribbon they want. We are the only company in the United States to offer this kind of product to our customers without a minimum order quantity. That means you can order as few as just one custom awareness ribbon, if that’s all you want. Custom awareness ribbons are a beautiful and powerful way to support someone going through a health crisis, or someone on an ongoing health journey. Sometimes, it can be difficult to figure out exactly what to say to someone who is struggling. Our custom awareness ribbons are a silent show of love and support for those times. They are also a wonderful way to advocate for yourself or a loved one, or raise awareness for your cause. And if custom awareness ribbons aren’t really your thing, no worries! We also carry classic awareness ribbons, fabric ribbons, and silicone wristbands. Whatever your awareness accessory needs are, we’ve got you covered. I hope you’ll join us next week for another edition of the Personalized Cause awareness blog!

Orange awareness ribbons are used to raise awareness for non-melanoma skin cancer. Black awareness ribbons are used to raise awareness for melanoma.

To order a custom orange awareness ribbon for non-melanoma skin cancer, visit: https://www.personalizedcause.com/personalized-awareness-ribbons/orange-awareness-ribbon-pin-personalized?rq=skin%20cancer

To order a custom black awareness ribbon for melanoma, visit:

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

#stayoutofthesun #skincare #skincancer #immunesystem #uvprotection #sunscreen #shades #uvawareness #nosun #nosundaysunday #melanoma #ultravioletrays #awareness #awarenessblog #awarenessribbons #cancerribbons

World Scleroderma Day

Davis Orr

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Happy World Scleroderma Day!

Hey buddies!!! What’s up? Glad you could stop by for another fun and informative awareness blog post. Because the only thing more fun than learning is nothing. In all seriousness, these awareness blog posts have come in so handy in my daily interactions with people. You would be shocked how relevant this information is during my Uber and Lyft rides. I don’t know why my drivers always seem to be able to have some situation that relates back to my newfound medical knowledge, but I love it. It’s kind of cool and surprising how much you really connect with people when you know a little bit about something that has affected their lives. I find that the level of human interaction is so much less superficial. I mean clearly these conversations keep arising from them asking me what I do. As soon as I answer that I work at an awareness accessory company writing their awareness blog, complete strangers just start pouring their lives out to me. It’s awesome to connect! I’m sure some of you guys have had similar experiences with your newfound medical knowledge, too. Anyway, I’ll get back to blogging now and stop telling you guys about my experiences with drivers. Today we are going to talk about scleroderma. I’m sure many of you remember that we have covered scleroderma before. We’re going to talk about it again today in honor of World Scleroderma Day, which is today.

Happy World Scleroderma Day, everyone! Every June 29, scleroderma organizations around the world observe World Scleroderma Day. The reason June 29 was chosen as the date is because on June 29, 1940, the famous Swiss painter Paul Klee died. Paul Klee is probably the most internationally renowned celebrity to have had scleroderma. Much of Klee’s later work was influenced by the progression of his disease. The work that nears his last years has very visual interpretations of his experiences and symptoms as a man with the scleroderma. His last few painting before his death seemed to reflect the pain he suffered from the disease. He was a brilliant artist, and he is one of my personal favorites. If you haven’t heard of him, I highly recommend taking a peek at his work. Klee was a prolific artist, creating something like 9,000 works of art. Not to mention all the other cool stuff he did. Maybe I’ll mention it a little. He did extensive work in Color Theory, and taught at Bauhaus, which is a famous German art school from 1919-1933 that had a tremendous influence on the art world. He was a super cool dude. If you’re into art you probably already this.

So… scleroderma. Let’s learn a little bit about the disease so we can understand Klee’s artwork a little more deeply. Scleroderma is an autoimmune disease that affects the skin, tissue and organs. It is a progressive disease, but it can often be managed with medications and other kinds of treatment. Scleroderma is a pretty rare disease. There are only around 100,000 people with scleroderma in the United States. The disease affects mostly women, generally between the ages of 30 and 50. Like all autoimmune diseases, the cause of scleroderma is unknown, and again, like other autoimmune diseases, genetics do seem to elevate your risk for developing the disease. People who have relatives that suffer from other autoimmune diseases, or scleroderma itself, may be more at risk for the disease. It can also develop in children, even though typical diagnosis usually takes place in women between the age of 30 and 50.

Autoimmune diseases like scleroderma are caused by the immune system mistakenly attacking healthy cells. A normal immune system is the body’s defender. The autoimmune system is responsible for fighting off any foreign invaders such as bacteria or viruses. With autoimmune diseases, the immune system starts attacking the body’s healthy cells rather than just the stuff that causes illnesses. Every autoimmune disease attacks the body differently. Each disease has a particular way that it behaves in terms of what it chooses to attack. With scleroderma, the immune system causes inflammation in the skin, tissues and organs. The most common symptom associated with scleroderma is a thickening or tightening of the skin, but it may also cause scarring in the lungs, heart, kidney’s and intestines.

Let’s dive a little deeper now that we have that basic overview. I want to first start off by saying that scleroderma is different from patient to patient. The disease is mild and easily managed for some, while it can be life threatening for others. Patients may experience different symptoms, and different forms of the disease. There is no roadmap for predicting how the disease may affect any particular patient. It’s one of those things in life that you just have to deal with as it comes. There are two main forms of scleroderma, which are localized scleroderma and systemic scleroderma.

Localized scleroderma mainly affects the skin, though it may also progress to include muscles, joints, and bones. Localized scleroderma, though it may be serious, is not as dangerous as systemic scleroderma because it does not affect the internal organs. Usually, localized scleroderma presents with morphea, which is medical term for patches of discoloration on the skin, and linear scleroderma, which is the name for bands of thickened, hard skin that may appear as streaks or lines on the arms or legs. There is a special name for linear scleroderma when it appears on the face or forehead, which is coup de sabre.

Systemic scleroderma is the most pervasive form of the disease, and also the most potentially serious. With systemic scleroderma, it affects more of the body. In addition to the skin, muscles, joints and bones, it also may affect the blood vessels, heart, lungs, kidneys, intestines, or other internal organs. Needless to say, scleroderma that attacks the internal organs may lead to death. There are two different classifications of systemic scleroderma, which are CREST syndrome (limited cutaneous systemic sclerosis), and diffuse cutaneous systemic scleroderma. Crest syndrome is affects mostly the skin of the fingers and toes and may cause nodules under the skin. Crest syndrome is often associated with Raynaud’s phenomenon. It may also cause difficulty with movement of the esophagus, pulmonary hypertension, and dilated blood vessels. With the second type of systemic scleroderma, diffuse cutaneous systemic scleroderma, it tends to involve the internal organs more. It may also affect the skin on the hands and wrists. This type of scleroderma causes the organs to build up scar tissue and over time the organ essentially hardens and “freezes”.

Because scleroderma is such a complicated disease, it is important that people with the disease to find rheumatologists who either specialize in scleroderma or have extensive experience dealing with it. There is no cure for scleroderma, however there are many different kinds of treatments and therapies that can be very effective in managing and controlling the progression of the disease. Treating scleroderma usually means trying to keep it at bay and prevent further damage from occurring. There are many different kinds of medications that can be used to manage symptoms. Patients will likely be put on anti-inflammatory drugs to minimize the severity of inflammation that can lead to permanent damage. Physical therapy and occupational therapy are also helpful preventative measures to help maintain flexibility or the skin and joints.

Scleroderma can be a potentially life threatening chronic autoimmune disease, but it is often manageable with the right treatment once your doctor figures out the best course of action. People with scleroderma lead happy, fulfilling lives, and learn to work around their illness and adapt to it as necessary.

Happy World Scleroderma Day, everyone! I hope you enjoyed today’s awareness blog entry and brief art history lesson. Again, I highly recommend looking into Paul Klee if you’re into art. I really love him, and there’s no shortage of work! That’s all for today. I’ll see you back here next week for another awareness blog post. Hope you all have a wonderful week!

If you’re a new reader, let me welcome you to the Personalized Cause awareness blog! Personalized Cause is an awareness accessory brand that specializes in custom awareness ribbons. Custom awareness ribbons are a unique way to raise awareness for your cause, advocate on someone’s behalf, or show support for someone when you may now know exactly what to say. Our custom awareness ribbons allow customers to personalize their awareness ribbon with any text they choose. The thing that makes our custom awareness really special is the fact that there is no minimum quantity order for custom awareness ribbons. Customers can simply order one custom pin or twenty different custom pins. Whatever your awareness ribbon needs, we’ve got you covered. If you’re not in the market for custom awareness ribbons, no problem. We also carry classic awareness ribbons, fabric awareness ribbons and silicone wristbands. Personalized Cause believes in the power of awareness. We’ve seen how one small awareness ribbon can transform a community. We know that educating people makes a difference. That’s why we’ve created the Personalized Cause awareness blog. We feel it is our duty to help raise awareness for the things that affect our customers every day. Our mission with this awareness blog is to create an awareness domino effect by educating our readers on as many causes and illnesses as possible. I hope you’ll join us here next week for another edition of the Personalized Cause awareness blog.

Teal awareness ribbons are used to raise awareness for scleroderma. To order a custom teal awareness ribbon, visit:

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

#worldsclerodermaday #scleroderma #sclerodermaawareness #sclerodermawarrior #awareness #raredisease #autoimmune #chronicillness #chronicallyill #chronicpain #awareness #awarenessblog #awarenessribbons #cancerribbons

HIV Testing Day

Davis Orr

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In the mood for Netflix & chill?

Hey, friends! Thanks for stopping by for another awareness blog post! I hope you’ve all been enjoying our awareness blog. I’ve certainly enjoyed learning about all the various causes and illnesses, and writing about them. The information has been useful in my personal life so much more than I anticipated it would be. It’s kind of weird, you know, how all of the sudden when you’re aware of something you start noticing it come up all the time. So far, I’ve managed to make myself look a lot smarter than I actually am. I’ll stop blabbering about the value of the blog in my personal life now and just get to the point. I know that’s what you’re all here for, anyway. Today is HIV Testing Day! So, obviously, we’re going to talk about that today. Because when it comes to your health, specifically your sexual health and safety, you really can’t be too informed or too careful.

National HIV Testing Day is observed every year on June 27th. National HIV Testing Day was designed to remind people to get tested at least once per year, depending on your sexual activity. The purpose of the day is to catch HIV early on because early detection leads to the best possible outcomes. People who are diagnosed and treated early can prevent serious complications, and often the disease does not progress into AIDS. The key is treating it early. Diseases are kind of like a snowball rolling downhill. At first, when they start out, they are small and slow, but the farther they get down the hill, the bigger and faster they get. You want to catch it when it’s still a slow and small snowball. That really goes for every disease. The stage a disease is in when it is detected is one of the greatest predictors of outcome. That’s one of the reasons we do this blog. We want to help our readers be able to catch things in early stages, either with their own health or the health of a loved one.

Now, lets start with the basics. HIV stands for human immunodeficiency virus. HIV can lead to AIDS, if it is not prevented with treatment early on. HIV isn’t like other viruses. With most viruses, such as the flu, the body goes through the stages of the illness and then eventually the body fights off the virus and you return to your normal health. Unlike most viruses, the body cannot ever fight off the virus. This means that once you have HIV, you will have it forever. HIV attacks the body’s T cells, which are responsible for helping the immune system fight off anything that may be attacking the body, such as an infection. Over time, HIV depletes the number of T cells in the body. This makes it much harder for the body to fight off infection and disease. Eventually, it can make it impossible to recover from infections or diseases. The immune system becomes so weak that it may be overcome by opportunistic infections or cancers. This occurs in the final stages of HIV, which is AIDS.

There is no cure for HIV, but early detection and treatment makes it much easier to control. HIV is controllable when you get to it quickly. Even though there is no cure, there are medicines to treat and control the virus. The biggest treatment for HIV is a combination of medications called ART. ART stands for antiretroviral therapy. ART uses several different antiretroviral medicines to slow down how quickly the virus multiplies. The different antiretrovirals are much more effective when used in combination, than using just one of any of them. If ART is started quickly after becoming HIV positive, the therapy can significantly prolong the person’s life. It can also keep HIV positive people healthy. In addition, ART reduces the chances of transmitting the virus to others. With the use of ART, people who are HIV positive may live about as long as people who do not have HIV. That’s remarkable considering that in the 90’s, before ART was developed as a treatment, HIV could develop into full blown AIDS in a matter of a few years. Before this treatment, HIV was almost certainly a death sentence; it was only a matter of how long.

There are three stages of HIV. The first stage is called Acute HIV Infection. This typically occurs between two and four weeks after being infected by the virus. Stage one may appear to be flu, with very similar symptoms since this is the body’s designed response to a virus. People in stage one of HIV are extremely contagious because the bloodstream is flooded with the virus. The problem is that most people in stage one do not realize that HIV is causing them to feel ill, if they feel ill at all. Sometimes, people in stage one may not experience symptoms at all. Symptoms can also be very mild, and easy to overlook. This is why many people are unaware that they have contracted the virus.

The second stage of HIV is called Clinical Latency. Stage two is also called asymptomatic HIV infection or chronic HIV infection. In stage two, the HIV virus is still reproducing, but it does so very slowly. This stage may go start off without any symptoms or usual illnesses at all. Stage two can last up to a decade, sometimes even longer, but it can also last as little as a few years. This is another reason why many people are unaware that they have contracted HIV. It doesn’t necessarily become apparent until it has progressed to late stage two or early stage three. HIV can still be transmitted during stage two. People who know that they are HIV positive and are taking ART are much less likely to transmit the virus during stage two because there are low levels of the virus in the blood. As stage two progresses, the amount of the virus in the blood starts to increase, and the T cell count begins to decrease. As the virus level increases in the body, people may begin to have symptoms and feel ill. This occurs right before entering stage three.

Stage three of HIV is AIDS. AIDS is the most advanced phase of HIV. AIDS damages the immune system so severely that they become prone to opportunistic illnesses, which are often severe. Prognosis for a person with AIDS is around three years if they do not receive treatment. People with AIDS experience symptoms similar to the flu. This may be a persistent fever, chills, sweats, swollen glands, weakness, and weight loss. Stage three is diagnosed when the T cell count drops below 200 cells/mm. It may also be diagnosed due to opportunistic illnesses. People who are in stage three have a very high level of the virus in their blood and are extremely contagious.

Getting test is the only way to be sure that you have or do not have HIV. Knowing your HIV status is imperative to your health, and the health of your partners. The virus can also be transmitted if you share needles, or from mother to child. Knowing your status and the status of those that may expose you to the risk is imperative. Knowing your risk factors is also key in prevention. HIV testing is easy to attain. Remember that all medical tests are confidential so don’t be afraid that your status may get out. First off, Planned Parenthood provides testing, for free if you are unable to pay. You can also text your zip code to 566948 (KNOW IT). There are even at home testing kits now. There are a lot of places that have free testing days, too, especially on HIV Testing Day. You can also get tested through your general practitioner.

So, if you’re in the mood for a little Netflix and Chill, make sure that you and your partner get tested and know your status first! Wishing you all health, happiness, and safe sex… today and always! Catch you next week.

If you’re a first time reader, let me welcome you to the Personalized Cause awareness blog! Personalized Cause is an awareness accessory brand that specializes in all kinds of awareness ribbons, but we’re famous for our custom awareness ribbons. Custom awareness ribbons are a customer favorite because they allow you to personalize any color ribbon with the text of your choice. Our custom awareness ribbons are also unique because they don’t require a minimum quantity order. You can order just one awareness ribbon customized with the name, date, or message of your choice, or you can order a bunch, with all different customization. Whatever your awareness ribbon needs may be, we’ve got you covered. If you’re not in the market for a custom awareness ribbon, that’s okay, too! We also carry classic awareness ribbon pins, fabric ribbons, and silicone wristbands. As you can see, we’re passionate about raising awareness! That’s why we started this awareness blog. The Personalized Cause awareness blog is dedicated to educating our readers about as many causes as possible. We strive to create a more informed and compassionate community through our awareness pins as well as our awareness blog. I hope you’ll join us again next week for our next post!

Thanks for reading!

Red awareness ribbons are used to raise awareness for HIV/AIDS. To order a custom red awareness ribbon, visit:

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

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National Infertility Awareness Week

Davis Orr

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It's National Infertility Awareness Week! Infertility is defined as the inability to conceive after one year of unprotected intercourse. The time period is six months if the woman is over age 35. "Infertility" is also the inability to carry a pregnancy to live birth.

  • 7.4 million women worldwide -- or 11.9% of all women -- have received some type of infertility services in their lifetime (2006-2010 National Survey of Family Growth, CDC).
  • 1 in 8 couples (or 12% of married women) have trouble getting pregnant or sustaining a pregnancy (2006-2010 National Survey of Family Growth, CDC).
  • Approximately one-third of infertility is attributed to the female partner; one-third attributed to the male partner; and one-third is caused by a combination of problems in both partners or the source of the infertility is unexplained (www.asrm.org).
  • A couple between the ages of 29-33 with a normal functioning reproductive system has only a 20-25% chance of conceiving in any given month (National Women’s Health Resource Center).
  • After six months of trying, 60% of couples will conceive without medical assistance (Infertility As A Covered Benefit, William M. Mercer, 1997).
  • Approximately 44% of women with infertility have sought medical assistance. Of those who seek medical intervention, approximately 65% give birth. (Infertility As A Covered Benefit, William M. Mercer, 1997)

Show Your Support of National Infertility Awareness Week

During National Infertility Awareness Week, if you would like to show your support of couples who are struggling with this issue, please consider wearing one of our infertility support ribbons.