CSS Awareness – May 2016
May 1st marks the real change of seasons for many of us on this planet. In the Northern Hemisphere the days are beginning to get warmer and we can see plants start to bloom and look hopeful to summer plans and time in the sun. The Southern Hemisphere begins to feel the chill in the air and can revel in the changes of the leaves. I have always loved the changes of seasons no matter where I have lived, maybe it’s the promise of the next season to come that attracts me or maybe it’s just the idea that we get to move forward and leave the old season behind us. May also marks something that has become important in my life, Vasculitis Awareness Month.
Ten years ago I had never heard of Vasculitis, it had not come into my sphere of understanding. I never knew anyone with Vasculitis nor had I really had any close contact with anyone who had a chronic illness. I was blissfully naïve.
Ten years ago I was hiking along the Grand Canyon with my kids. I was taking a few years off my career as educator to home school my own kids through middle school. I had intent to go back to work and innovate the next wave of creative teaching methods. What I didn’t realize that this was to be my last carefree spring. Everything would change in August of that year. I would cough. I would cough again. I wouldn’t stop coughing. I would break out in hives and other rashes. I would have horrific neuropathy pain in my hands and feet. I would become a professional patient seeing more ‘ologists’ than I even knew existed. It would take until April the following year to have a name for what was happening to my body.
The first time I heard the diagnosis of Churg Strauss Vasculitis I wanted to scream. I was sure I would never see my children graduate high school. I was scared. Even my doctor at that time had no magical place to send me to for information. I was alone. I felt cold and dark inside. I searched the Internet and could only find documents telling me my life expectancy was about 5 years. I read every article and got more and more scared. Then I found the Churg Strauss Association and the Vasculitis Foundation and suddenly I could see a ray of light coming through my darkness. They had the latest information and they had lists of doctors who actually knew about Churg Strauss Vasculitis. I traveled across the country to Cleveland Clinic to see an expert and get more information and hope. I found a Yahoo group just for CSS patients so I could express my fears and hear from people telling me that have lived 10 years and beyond with this illness. I saw hope.
A year later when nothing was working I attended my first Vasculitis Foundation conference and learned about a new medicine (Rituxan) that I knew I had to get on. Without the Vasculitis Foundation and the Churg Strauss Association I would have never found this hope. I owe a lot to the Awareness that they were promoting. Recently I discovered another new medication (Nucala) that has made a huge impact in my life. Without Awareness I would have never know about this medication.
Everything has an Awareness Month so why should we bother? Churg Strauss Vasculitis is so rare why bother? IF we can save one person by making people aware of Vasculitis and Churg Strauss at an earlier stage then we have succeeded. IF we can get doctors to keep Vasculitis and Churg Strauss as a possible diagnosis in the back of their heads when a patients arrives at their office then we have won. IF we can see our youngest Churg Strauss patient graduate college we have won. IF a Vasculitis patient is able to carry a pregnancy and enjoy the life of her baby then we have won.
SO take time this month and do something to raise Awareness. It can be a simple act. Wear a Vasculitis themed t-shirt, drop off some flyers about your type of Vasculitis to a doctor’s office, post something about Vasculitis on FaceBook or other social media – share your story with the world. We can continue to hide, embarrassed by our chronic illness or we can step out there and let people know we carry this invisible, chronic, incurable illness with us and we want to talk about it.
You can see the video awareness video I made for the Vasculitis Foundation here. I feel very fortunate that through Awareness and Education I am still around kickin butt. Later this month I will get to see my 3rd and final child graduate high school. I am here, I am alive and I will continue to raise Awareness and Education. I am one of the lucky ones.
With great sadness we must understand that Churg Strauss Vasculitis is still a deadly illness. You can read how we, as a group of CSS patients write our stories and send them out to the world to raise awareness in memory of Kevin Selig who lost his battle way too soon. We need to continue to raise Awareness and fight for research so that we don’t have to announce the death of another person with Vasculitis.
I write under the Pen Name of Karen in Wonderland because Vasculitis was like going down a rabbit hole for me. I have since exited that rabbit hole and will try my best to educate the public about Churg Strauss Vasculitis.
Kevin Selig was diagnosed in January 2014 with Churg-Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
by karen in wonderland