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Filtering by Tag: scleroderma awareness

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

Scleroderma Awareness Month

Davis Orr

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June is Scleroderma Awareness Month!

Hey, everybody! Welcome back. I’m so glad you’ve joined us for another installment of the awareness blog! I hope you’ve all had a wonderful week. Today were going to be talking about scleroderma. I’m excited to do that because up until now, most of our topics have been diseases or causes that people have heard of, or at least knew the name of. Scleroderma is kind of off the radar for most people, unless they know someone who has been affected by it. The point of this blog is to raise awareness and educate people about things that commonly affect others, but it is also to raise awareness for illnesses and causes that people may not know about. The mission is to familiarize people with an array of causes so that we can create a more knowledgeable and understanding society, with a culture of inclusion and acceptance. So, I’m just going to get right to it, today. Here we go!

Chances are, even if you have heard of it before, you don’t know exactly what scleroderma is. That’s totally okay! It’s nothing to be embarrassed about. You’re not expected to know everything about every cause. That would be impossible. Besides, most people don’t really know what scleroderma is. That’s because scleroderma is a group of rare autoimmune diseases. Keyword: rare.

Scleroderma is an autoimmune disease. Autoimmune means that the body attacks itself. Normal immune systems are designed to fight off any foreign bodies, like a virus or bacteria, in order to keep you healthy. Autoimmune diseases mistakenly attack normal healthy cells/tissue in the body. This causes an inflammation response. Inflammation, over time, causes damage to the area it occurs in. For example, inflammation in the knees over a long period of time may lead to knee pain due to damage or other joint problems. All autoimmune diseases share this trait, but the way in which the body attacks itself or where it attacks itself is unique. If you’ve read my first few awareness blog posts, you’ll recognize this metaphor: Autoimmune diseases are all the same ice cream, just different flavors. So, what are the characteristics of scleroderma flavor?

Scleroderma is a chronic illness, meaning that there is no cure for the disease. Scleroderma is a skin disease, which causes the body to produce too much collagen. Sounds good, right? You’ll never age. Wrong. Although, some people with scleroderma have been noted as looking younger. Scleroderma causes the skin to thicken and feel tight. This thickening can occur internally, too, leading to tissue damage and organ function impairment. Scars may form on the lungs or kidneys, and blood vessels may thicken and harden leading to serious circulation issues.

There are two categories of scleroderma, which are called localized scleroderma and systemic scleroderma. The difference is between them lies in how much of the body is affected. Each category has different classifications. We’re going to look at them in more depth now.

The first category of scleroderma, called localized scleroderma, is broken down into two different types. The first type of localized scleroderma is called morphea, and the second type of scleroderma is linear. Localized scleroderma usually just affects the skin. Morphea causes patches on the skin to form. These patches are hard and oval shaped that start off in a reddish-purple color and then turn white in the middle. Rarely, morphea can affect the blood vessels or internal organs; this is called generalized morphea. Linear scleroderma appears in lines, as the name suggests. With linear scleroderma, the thickened skin appears in streaks across the face, arms, or legs.

The second category of scleroderma is systemic scleroderma, which can also be referred to as generalized scleroderma. There are also two different types of systemic scleroderma. The first type of systemic scleroderma is called limited scleroderma. Limited scleroderma doesn’t show up one day out of nowhere. It develops slowly across the skin on the hands, feet, or face. Limited scleroderma can also affect internal organs, such as the lungs, intestines, or esophagus. When this occurs, it is called CREST syndrome. CREST syndrome stands for calcinosis, Raynaud phenomenon, esophageal dysmotility, sclerodactyly and telangiectasia. These are the symptoms that make up the syndrome. This damage in the internal organs can become very serious. Scleroderma gradually hardens the organs until they no longer function. It’s almost as if the organs become frozen. As you can imagine, as the disease progresses in the organs, surgery may become necessary to bypass the non-functioning organ. This could include a feeding tube or ostomy bad. Although potentially very serious, the prognosis for many limited scleroderma patients is good. The disease is progressive, and does worsen over time, so it is important to have regular medical care to monitor the progress of the disease. Diffuse scleroderma is the second type of systemic scleroderma. Diffuse scleroderma develops quickly, as opposed to limited scleroderma, and affects the trunk of the body in addition to the extremities. Diffuse scleroderma can also affects the organs, in the same ways as limited scleroderma.

Symptoms of scleroderma are unique to each patient. Not every patient will present with the same symptoms in the same way. Symptoms usually present in some combination and degree of the following symptoms.

• Thick, smooth, and shiny skin, most commonly on the face or hands. • Raynaud’s syndrome, or Raynaud’s phenomenon, can be a component of scleroderma. Raynaud’s is characterized by fingers and toes that turn white, blue or red and feel unusually cold. • Fingertips may develop sores or ulcers. • Telangiectasias, which looks like a bunch of little red dots on the chest or face. These little red spots are opened blood vessels. • Swollen, painful, or puffy toes and fingers. • Swollen, painful joints. • Weakness of muscles. • Sjogren’s syndrome, which causes dryness. This dryness is usually noticed in the mouth or eyes. • Edema, which basically just means swelling, in the fingers and hands. • Heartburn. • Feeling short of breath. • Diarrhea. • Weight loss.

Almost all patients who have scleroderma have some sort of skin involvement. One of the first symptoms that occur in scleroderma is Raynaud’s phenomenon. You may notice that your fingers and toes become cold and numb, and even painful, when you experience stress or become upset. It may also occur when you are exposed to something cold, for instance an icy soda can. The digestive system tends to be affected in some types of scleroderma. The most notable symptoms of this would include acid reflux, mal-absorption of nutrients, or difficulty moving food through the intestines. Some scleroderma can affect the heart, lungs and kidneys. If not treated, organ involvement may become life threatening. I know a lot of this has been mentioned earlier in the post, but I wanted to give you a brief synopsis of symptoms.

A doctor can diagnose scleroderma by doing a physical examination, going over your health history, taking x-rays, running blood tests, pulmonary function tests, CT scans, echocardiograms, and/or a biopsy. Diagnosis may require any or all of these tests. Most people with scleroderma are women, and are diagnosed between the ages of 30 and 50 years old. Doctors are unsure of what causes the disease, other than autoimmune system dysfunction. Most autoimmune diseases have no specific “cause”. It is believed that genetic predisposition may play a role in the development of autoimmune disease in some patients, but not all.

There are many different ways to deal with the symptoms of scleroderma, and treat the disease. First off, there are many medications that can help alleviate or prevent the symptoms of the disease. Rheumatologists, the doctors that treat autoimmune diseases such as scleroderma, can use immunosuppressant medications that suppress the overactive immune system. They also use medicines that dilate blood vessels, to prevent problems in the lungs or kidneys, as well as help with Raynaud’s phenomenon. Acid reflux medicines are used to prevent acid reflux, which can lead to development of scleroderma in the esophagus. Treating and preventing infections or virus’ can also be used to prevent further damage to lungs. Pain relievers may also be prescribed for patients when over the counter medicines are not effective. Other types of therapy may also be prescribed, such as physical and occupational therapy. These types of therapy can be very helpful in managing pain, improving mobility, and help patients develop coping skills to maintain their independence. In worst-case scenarios, organ transplants may be needed to replace badly damaged organs.

Scleroderma is tough disease, made even tougher by the fact that many people have no idea what it is or how it affects people. Thank you for taking the time to learn a little bit about it. By choosing to educate yourself, you create a little bit more compassion and understanding in the world, which I think we can all agree is needed. I’ll see you guys next week for another edition of the awareness blog!

If you are new to our awareness blog, welcome! I am so glad you stumbled upon us. This awareness blog is dedicated to raising awareness for all sorts of causes and conditions. If you’re reading this, that means you’ve found our website. You may be wondering what we do here. Personalized Cause is an awareness accessory company that specializes in custom awareness ribbons. Since custom awareness ribbons are a product unique to our business, you may be wondering what they are. Custom awareness ribbons are awareness ribbons that you can personalize with any name, date, phrase, or message you want. We are the only company in the U.S. to offer our customers the ability to customize awareness ribbons, without requiring a bulk order. That means you can order just one custom ribbon, if that’s all you want. You can also order a bunch, with all different personalization. It’s completely up to you. We also carry classic awareness ribbons, fabric ribbons, and silicone wristbands. We’re your one stop awareness shop! Take a look around the site to see all of our products.

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

#scleroderma #skin #thickskin #connectivetissue #connectivetissue #rheumatoiddisease #autoimmunedisease #awareness #awarenessblog #awarenessribbons #cancerribbons