Diagnosing Churg Strauss (CSS) is difficult at best and nearly as hard as finding a unicorn at it’s worst. Part of the problem is that Doctors may have never heard about CSS. In a lot of medical textbooks it takes up less than a page. Diarrhea is more covered in medical textbooks than CSS and other types of Vasculitis.
We are rare. I fully understand that we may be only case our doctors ever see. Most of us end up in the hospital with some organ damage before diagnosis. Wouldn’t it be nice if more people could be diagnosed before organ damage? before lengthy hospital stays? before they have to numerous doctors all while feeling they are ‘making all their symptoms up’? Is there a way to better educate doctors about CSS and other Vasculitis diseases?
How much is it worth to you to educate doctors? How much would you be willing to give so doctors to know we are not such a rare anomaly? How much would you give to help doctors the knowledge to better manage our illness?
I ask these questions because you have a chance to help. You can make a difference.
The is sponsoring a class for doctors (aka CME class — doctors need to take so many of these per year to keep their licenses active). They are partnering with the Cleveland Clinic to offer such a class. It’s called, Primary Vasculitides: Best Practices and Future Advances. They need OUR help in order to make this happen. Would you be willing to give a few dollars to make this happen, especially on Giving Tuesday 2016?
It’s going to first originate as an in-person, one-time only presentation through the Cleveland Clinic next spring. They are going to record this entire session and then turn it into an online CME course that doctors anywhere can access and use. This makes it so once available online we can gently steer our doctors toward it.
Here is the link to the course information:
Educating ourselves about our illness has always been my #1 priority. So this opportunity to educate doctors is an easy donation for me to make. I understand our medical expenses are astronomical at times and we barely have a few dollars to spare but if you do this would be a great cause.
Share and post this to you wall. Can you imagine if just 1/4 of your friends and family gave $5 each what a difference this would make in helping to educate doctors. Imagine if someone you knew was looking for a great cause to donate to before the end of the year decided to give $100 or more? Don’t ever think small donations do not add up, they do! So, please think seriously about giving any amount to help educate doctors so that they can better help us and yet to be diagnosed patients. You do not have to wait till Tuesday to donate.
This post is easily shared though my Karen in Wonderland Facebook Page.
Also you are much better off donating to the Vasculitis Foundation than donating to dig a big hole.
Here’s the very easy to use direct donation link. Not the one to dig the hole.
Thank you, and with Education we have a better chance of better outcomes and better quality of life.
Posted in CSS by karen in wonderland with .
When I was first diagnosed with Churg Strauss Syndrome (CSS) all I wanted to do was run away. Run away from the diagnosis, run away from reality, run away from my body.
After speaking with my doctor which quickly multiplies to be many doctors I was so confused, scared and just wanted answers. Nobody seemed to have any, there were no clear cut medical protocols for CSS and I was the first CSS patient for most of my doctors. I realized I had entered a tunnel… a long dark tunnel.
I was so ignorant of CSS and all that came with it. I relied heavily on a Yahoo group for information and glimmers of hope. SO many wonderful people told me things would be OK and helped me stand on my own while navigating the new world of specialist appointments and uncertainty. At that time there were no Facebook groups about CSS. I would say I had come out of the tunnel but the Winding road laid ahead.
I spent many, many hours at a local medical library getting research articles and reading everything I could find. I ordered medical textbooks just to read one chapter on Vasculitis and CSS. I was becoming an unofficial medical student out of necessity to understand my illness. The road was less traveled but with each piece of knowledge I felt more empowered. The information was both hopeful and doom and gloom. I read it all… I kept researching, I needed to know everything to be in control.
I attended Vasculitis Conferences put on by the Vasculitis Foundation and tried to understand everything the medical experts were presenting. What I did not understand, I looked up and studied. The more educated about CSS I became, the more at peace I became. I stopped running (although sometimes when new things pop up I still feel an urge to run). I realized that for me education was the key to becoming empowered and calm about CSS. (link to my conference notes from 2014 UCLA conference on Vasculitis)and ( 2016 UCLA conference) and (link to my Jacksonville FL conference notes)
Fast Forward ten years. The internet is now so vital in researching any rare illness and there is such a wealth of information out there. There are many good sites out there and many Facebook groups to ask other people with CSS questions.
For the past few years I have felt the need to share the knowledge that I have obtained and try my best to share things in these Face Book groups. I try to read the articles and then pass them along with summaries or my own comments. I get to share how I cope or things I find may work. I get great pleasure out of taking complicated information and breaking it down to easy to understand parts (it’s the teacher in me coming out again).
I have found two other wonderful site and blog that seem to compliment what I do with my own web site and FB blog. These are not big medical center sites — these are 2 sites run by CSS patients so they speak from the heart and understand what we are going through.
First off, Michael is from the UK and has a wonderful down to earth site about CSS/EGPA. He speaks in free flowing language that is easy to understand and poses things in question and answer format. He also does his own artwork which is very quirky and fun. If you have never seen his EGPA pages I highly recommend you spend some time investigating them.
Second is a FaceBook page called Vasculitis Journey. The writer is newly diagnosed and writes totally from the heart. She is not putting on a show, she writes about her experiences and it is like reading a travel journal of her adventures with CSS. I love her style and her positive attitude. You can tell she is searching for answers and scared. By sharing this we see that she that she is actually a little bit of each one of us. Scared and searching for answers. She is a person that someday I want to sit in a coffee house with and talk for hours.
I appreciate the positive messages of both these sites and love the idea that our 3 sites are such compliments. Michael’s EGPA.info is great info and full of resources and factual information. My site and blog are personal experience with links to information and research. I write from my heart and try to link it with information we may be craving about CSS. Vasculitis Journey is like reading a wonderful book. Chapters are her posts about life events and challenges with CSS as she continues her quest for answers.
I hope these three personal CSS sites/blogs will help you navigate your winding road of CSS and may help you get out of a tunnel, if you are stuck there.
All road/tunnel photos were taken by me on a drive home from a doctors appointment in San Francisco along the California Coast to Santa Cruz.
Posted in Uncategorized by karen in wonderland with .