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June is National Scleroderma Awareness Month

Teal Ribbon - SclerodermaThere's a reason why so many medical conditions have months focused on their awareness. Have you ever heard of scleroderma? (hmmm, maybe) Do you know what it is? (nope) And this is what we have to do to make people more aware of rare diseases.

Scleroderma IS:

  • an immune disorder affecting the body's connective tissue.
  • a problem with the body producing too much of the protein collagen, causing thickening and tightening of the skin (localized scleroderma).
  • even more serious if internal tissue also gets hard and thick, causing swelling and pain in muscles and joints. If scarring and thickening is extended to lungs, kidneys and blood vessels (systemic scleroderma), the condition can be life-threatening. 

Scleroderma IS NOT:

  • contagious and does not seem to be genetic.
  • as common in men as it is in women.
  • always easy to diagnose since other diseases can have similar symptoms.
  • curable, but symptoms and damage can be reduced.

It's important to know that scleroderma is very complex: it can cause almost no symptoms or it can be life-threatening. While doctors and researchers are doing what they can to learn more and find more effective treatments (and a cure, of course), awareness and sharing of information is crucial. One "share" or "post" or "retweet" can reach hundreds or thousands of people who might not otherwise even know about rare diseases and conditions like scleroderma.

For more information, check out The Johns Hopkins Scleroderma Center.

Patients with scleroderma may not feel the need to wear medical IDs, but given that the condition is uncommon and not always recognizable or easily diagnosed, medical professionals need to know what they're dealing with. Consider wearing a Squid Square or a Squid Tag so you have all of your crucial medical information with you at all times.



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