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

Personalized Cause

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

World Scleroderma Day

Personalized Cause

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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

Rare Disease Day

Personalized Cause

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Today is Rare Disease Day!

NORD is the official US sponsor of Rare Disease Day®, which occurs on the last day of February each year. On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children.

Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. Doctors are taught, "when you hear hoof beats, think horses not zebras." This is why those with rare diseases often refer to themselves as zebras and wear zebra print awareness pins.

#rare #raredisease #rarediseaseday #disease #disorder #genetic #geneticcondition #geneticdisorder #zebra #zebraprint #awareness #cure #treatment #medicine #uncommon #illness #chronicillness #chronicpain #personalizedcause