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!
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