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.
• Feeling short of breath.
• 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!
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