Help Raise Scleroderma Awareness

images (13)Did you know there are as many as 80 known types of autoimmune disorders in the world? According to the American Autoimmune Related Diseases Association (AARDA) they affect up to 50 million Americans. Some of these disorders do tend to run in families. However, no one knows the exact cause of autoimmune disease; the only thing medical experts are sure of is that it can be traced to a defect in the immune system. The immune system may start acting strange and prompt your body’s organs to make too much protein collagen. As currently there is no cure, treatment focuses more on relieving symptoms.

Scleroderma is one of these diseases – it is very rare and very progressive. What’s even worse is that there still are many undiagnosed cases out there. Scientists have found that about 300,000 Americans have developed scleroderma, which is translated as “hard skin”. Among its most visible manifestations is severe hardening of the skin. It also causes changes in your muscles and internal organs; this is because the immune system goes out of control and starts fighting off anything in our body it doesn’t recognize.

Many patients, however, can lead a full, productive life if their doctor finds a way to control the disease. In other words, research is vital, as it can save millions of lives. People from the Scleroderma Foundation have dedicated their lives to helping others learn more about this devastating disease and raise more resources for medical research. It is all about sharing information and helping patients, families, providers and caregivers.

Here is a list of things anyone can do to get the word out for June’s Scleroderma Awareness Month:

    • Send a letter to your local radio, TV channel or newspaper and share your story or the story of someone you know. Become an advocate for scleroderma sufferers and connect to all people knowing absolutely nothing about the disease or to those who want to gain more knowledge.

 

    • This month, update your Facebook profile picture with a teal ribbon (which is one of the popular scleroderma awareness symbols) and get your friends to hit the like button. Also, find and download online resources or simply use the hashtag #hardword on Twitter.

 

    • Organize an exciting activity to raise awareness in your local community. You can go with anything from gigs, marathons, university lectures, fashion shows, informative talks. Design an effective poster or promotional rubber bracelets including info about the event and give them out at local malls or coffee shops. Also, promote healthier lifestyle and eat more organic foods and super-foods.

 

    • Talking about rubber bracelets, these products are the perfect to show what you care about, because they never go out of fashion and are the perfect tool called “word of mouth marketing”. They are also 100% customizable, so go online and find a reputable manufacturer, use their website design tool and choose your own original message. Here are a few ideas: “I Am Scleroderma”, “Help Put an End to Sclero – What?”, “Hard Word, Harder Disease”, “Think Teal”, or “I Walk for Scleroderma Awareness”.

 

  • Share information about the need for diagnostic training of medical experts. We meet someone who is a scleroderma survivor and we say: “Wow, I have so much admiration and respect for that guy!” but what most of us don’t realize is that this patient’s life lies entirely in the hands of his doctors. The more medical experts recognize the symptoms, the better chances the patient stands.