Vasculitis Awareness Month — May 2015

On June 21st of 2014 we lost a Churg Strauss Syndrome (CSS also known as EPGA) warrior to this chronic illness that goes unrecognized in many patients until it has caused irreversiblekevinselig damage to major organ systems.   His name is  (as he lives forever in our hearts) Kevin Selig and it is with great honor of him and and his wife, Amy that we try to bring forth awareness of Churg Strauss Syndrome every month by posting a personal story of someone that is living with CSS.

May is a very interesting month when it comes to Churg Strauss Syndrome —IMG_3148 May has been designated International Vasculitis Awareness Month. CSS is a form of ANCA related Vascultis.    On first thought I’d like to think what an honor and WOW!, we have made it to the Awareness phase where people are taking interest in Vasculitis in all it’s forms.  Then with Further Investigation I suddenly realized we ‘share’ this Awareness month with no less than 20 other ailments….   Suddenly my bubble was busted, I no longer felt that sense of specialness.  We share it with some rather heavy hitters like Lupus Awareness, National Mental Health Month, Brain Cancer Awareness Month and  Skin Cancer Awareness Month.

But, it was making me feel like Vasculitis was just a little world that nobody knew existed  that seemed way too much like one of my Favorite children’s Books, Horton Hears a Who.  HortonHearsAWhoBookCover  Except for some wonderful ‘Hortons’ at regional and international Vascultis Centers., like in Horton’s Hears a Who screaming out… “We are here, We are here, We are here”

In the book, they tie Horton up and threaten to boil the speck in a pot of “Beezle-Nut” Oil.  To save Whoville, Horton implores the little people to make as much noise as they can, to prove their existence. So almost everyone in Whoville shouts, sings, and plays instruments, but still no one but Horton can hear them. So the Mayor searches Whoville until he finds a very small shirker named JoJo, who is playing with a yo-yo instead of making noise. The Mayor carries him to the top of Eiffelberg Tower, where Jojo lets out a loud “Yopp!”, which finally makes the kangaroo and the monkeys family hear the Whos. Now convinced of the Whos’s existence, the other jungle animals vow to help Horton protect the tiny community.

I smiled as I remembered that story and recollected that in the end the smallest resident of Whoville with a tiny yell of ‘YOPP’ was the one who saved WhoVille from bring being boiled in Hot Oil.Dr

Maybe we need to find our inner voices and YELL out our own Little “YOPP” and let the medical community know… “we are here, we are here, we are here”.   Maybe We,  as CSS warriors, survivors and personal investigators need to make ourselves heard outside our little “Whoville’ community.

So what am I asking you to do?   What can ‘we’ do to make ourselves heard above the noise from the Boiling Oil?   Think little…   make the earth move by doing little things.

* Share this post and hopefully people will want to know more and click on the links posted to educate themselves.

* Be active when asked to participate in research especially patient centered research. The vasculitis research network called the Vasculitis Patient-Powered Research Network.

Here is some more information about them:  http://vpprn.infl.tv/refer/12q-1w

Also The VCRC Contact Registry is a method by which patients with vasculitis can register themselves with the VCRC in order to be contacted in the future about clinical research opportunities and updates on the progress of the VCRC research projects. The contact registry is anonymous and free of charge.

* Help others find resources when they are first diagnosed with Vasculitis — print out the handouts from the Vasculitis USA and Vasculitis UK sites,  Mayo Clinic, Cleveland Clinic, CSS Association or anywhere else you find good, reliable information.

* Educate yourself about your diagnosis and your options, second and third opinions are IMG_3088not a sign of weakness but of a well educated patient.  Read, Question, and go to symposiums, watch videos from experts online and attend  Web-casts to learn more.

*Send me your stories, your pictures, your triumphs and your fears.   Let’s post them in memory of Kevin so his memory can help save lives in the future.   Tell me about what it is like to live with CSS, or live with someone who has CSS.  Tell me about raising your kids and living your life along with CSS.  So many amazing medical discoveries and some new medicines that help control  Vasculitis and CSS have come aIMG_2985bout since I was diagnosed 8 years ago.  This is just the tip of the iceberg.   Let people know we exist and although we HAVE a chronic non curable illness we choose to go out and LIVE and educate others.  Your story could be the ONE that just ‘clicks’ with a reader who realizes that they may have a form of vasculitis and asks their doctor to investigate further.  We have the power to impact lives in a positive way, even if it is from our couches wearing our pajamas on some days.  (and remember we can post with just first names or initials if you wish)

*  AND here’s the BIGGIE —  let’s start by educating our doctors, the ones on the front lines, the General Practitioners, the Internal Medicine people, the Family doctors….  The ones we see first when all hell is braking loose in our bodies and we don’t know which way IMG_2774to turn.  Print out the handouts available on the National Vasculitis Websites to hand to your doctors, nurse practitioners and other office staff.  Make it so in the far recesses of their mind they might just think about Vasculitis as a diagnosis and not just a question on their medical board exam.     We have the power to make a difference and in 2015, let’s do that.   No, stunts like throwing ice water on oneself only goes so far (ok, it did raise a crazy amount of money)…   but if we educate just one Dr each about Churg Strauss Syndrome and Vasculitis and IF we each can be a factor in getting ONE patient diagnosed before permanent organ damage, imagine the impact we could have.

Be a Jo-Jo Who!   Be the littlest voice with the huge impact.11008397_10153083775956904_4581852438992061988_n

The goal of Vasculitis Awareness Month is to raise awareness and understanding of vasculitis around the world. We believe everyone should know about the impact that vasculitis has on our patients and their families. We encourage every member of the vasculitis community to organize or participate in an awareness event in their area.

This year’s slogan:

Vasculitis.

More common than you think.

More serious than you know.

 

to return to other monthly CSS awareness posts

to return to more information about CSS / Vasculitis

to return to the Karen in Wonderland Blog Posts

 

 

 

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