In this video from Scleroderma and Raynaud’s UK, 53-year-old Lorraine shares how she was diagnosed with scleroderma in 2010. Read our list of 12 things to care for when you have scleroderma. Lorraine talks briefly about her scleroderma diagnosis and how she manages the disease on a day-to-day…
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Last week’s Rare Disease Day had one overarching topic: research! Rare diseases are often overlooked by governments around the world when it comes to financing important research. They tend to use taxpayer dollars to fund research into more well-known diseases. Find out more about the importance of raising the public profile of scleroderma here. …
What Is Sine Sclerosis?
Sine scleroderma is the term used when there is no skin involvement with the disease. (“Sine” is latin for “without.”) Typically, scleroderma patients experience problems with the skin as the disease causes the body to overproduce collagen. However, in sine scleroderma, internal parts of the body can be affected with fibrosis…
12 Things to Care for When You Have Scleroderma
According to the John Hopkins Scleroderma Center, scleroderma takes a big toll on your body, both emotionally and physically. There are a number of body parts that may be directly or indirectly affected by scleroderma and should be watched. Since scleroderma varies from patient to patient, the symptoms and physical effects can…
How Serious is Scleroderma?
Even though scleroderma affects around 2.5 million people worldwide including 300,000 people in the U.S., it’s a disease that few people know about. The rare autoimmune disease affects the skin and internal organs, but just how serious is it? We’ve put together some information that explains how serious the disease can be, who it affects and…
According to a report in the Daily Telegraph, an Australian family is set to tackle an ambitious 500,000-step journey to help raise awareness and money for scleroderma. Find out more about scleroderma from diagnosis to symptoms here. The 450km (280 miles) walk from Mount Annan to Ariah Park in…
Raising The Public Profile of Scleroderma
Raising awareness of scleroderma is of ongoing importance and every little bit of publicity and every story highlighting the disease works towards this. The Facebook group Live, Breathe and Fight provides a platform for scleroderma sufferers worldwide to reach out to one another and to find out more information about…
Explaining Stem Cell Treatment for Scleroderma
Scleroderma is a chronic autoimmune disease where the body produces too much collagen, causing skin and other organs to become stiff and tight. There’s currently no cure for the disease, but there are different treatments which can ease the symptoms. Here are seven tips to manage your fatigue.
8 Tips to Help You Deal With a Loved One’s Passing
Learning that a loved one has a chronic illness is devastating, and even more so if that illness is likely to cut their life short. Everyone deals with the death of loved ones differently, the grieving process is varied and there is no wrong or right way to go about…
4 Breathing Mistakes You’re Probably Making
We need to breathe to stay alive. For some of us, this process is simple and we don’t think too much about it. For others, it’s a constant struggle that requires a lot of concentration and effort. For all of us, it’s important we’re aware that there’s a right—and wrong—way…
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