Scleroderma. Hard Word. Harder Disease.
Have you ever seen someone wearing gloves on a warm day? Have you ever seen someone who on the outside looks healthy but seems to struggle to get up from a chair or climb stairs? The answer may be scleroderma.
But chances are you don’t know scleroderma or have never even heard this hard word. Most people haven’t until they or someone they know gets this diagnosis. You don’t know the pain and challenges that this relatively rare autoimmune disease wreaks on its sufferers. It’s a hard word but an even harder disease.
Scleroderma is derived from 2 Greek words: “sclero” meaning hard and “derma” meaning skin. This crippling autoimmune disease causes thickening and hardening of the skin which can be so severe it steals away the use of patients’ fingers, hands and limbs. As it advances throughout their bodies, the uncontrolled growth of fibrous tissue can cause life-threatening damage patients’ hearts, lungs, kidneys and other organs.
Sandee Billen Maas knows this hard disease all too well. Diagnosed in early 2011, Sandee has the diffuse systemic type of scleroderma which means it is affecting her skin and internal organs.
At 47 years old, Sandee was a healthy, strong woman with a career and family. Scleroderma changed the direction of her life very quickly. The pain and difficulties she has had and continues to have are not always apparent. “It’s hard to ask for help when you do not look like you need it. Some days I feel like I wish it were more clear that I have such a war going on inside my body ” Sandee said.
After going into respiratory failure twice, two years of dialysis before a kidney transplant in 2013 and many other complications, Sandee tries to find the new normal and is a fighter. It is shocking how fast scleroderma can change everything in your life. Resilience is an everyday experience with the battle of scleroderma.
Sandee knows the fear and loneliness of being diagnosed with a disease that no one has heard of. Trying to explain it to friends and family, the looks of disbelief she gets when she may not look sick on the outside but is in pain and fatigued all the time on the inside. That is why Sandee is helping others with scleroderma get the education and support they need. She leads the Scleroderma Foundation-Rocky Mountain Chapter Denver area support group because she wants others with scleroderma to know that they are not alone.
June 29 is World Scleroderma Day. June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s work was strongly influenced by his disease.
The local Chapter has been participating in a month long social media campaign in June that touches on the difficulty of the word and the gravity of scleroderma, a rare disease with no known cause or cure. Daily posts and tweets (#hardword) educate and challenge people to take a pledge to tell one person about the disease.(Like, follow and share at www.facebook.com/COScleroderma and www.twitter.com/SclerodermaCO.)
New this year is a virtual flash mob through Thunderclap. Supporters worldwide will use the social media tool to share a Scleroderma Awareness campaign message at the same time across Facebook and Twitter. On June 29, World Scleroderma Day, the message will encourage people to learn more about scleroderma and tell others about the disease. Hundreds have already signed up for Thunderclap and you can too at www.hardword.org.
Sandee Billen Maas will tell her story at #IgniteDenver23 on Thursday, June 30 at the Oriental Theatre in Denver. She’ll spark the audience with her discussion on “You Don’t Look Sick-When Public Opinion Goes Wrong.”
Making a hard word and harder disease less difficult by spreading awareness!
The Denver area is fortunate to have one of only about 30 scleroderma programs in the U.S. located right here at the University of Colorado Hospital-Anschutz Campus in Aurora. This program is headed up by Dr. Aryeh Fischer. Patients travel from all over Colorado and surrounding states to receive care at this facility. This program is recognized as a center of scleroderma excellence by the Scleroderma Foundation for its expertise in the care of patients with scleroderma, conduct of scleroderma research and conduct of education activities about scleroderma, including hosting an annual Patient Education Day in partnership with the Rocky Mountain Chapter to be held this year on October 16.
To learn more, please contact the Scleroderma Foundation Rocky Mountain Chapter at 303-806-6686 or firstname.lastname@example.org.