CSS Awareness in Memory of Kevin

( This post is part of a 1st of the month awareness campaign  for CSS to try to make more people aware CSS and Vasculitis which hopefully will lead to earlier diagnosis)



An amazing thing happened today, I sat on my porch and watched a humming bird eat from a feeder. I saw him drink and swallow. I sat there quietly and still and enjoyed watching him come back for more over and over again. I thought back to eight years ago and how hectic my life was and how I would have never been able to enjoy this simple pleasure. I thought about how much my life has changed and what my turning point was. I thought about the what if’s and the maybe’s but to tell you the truth I am finally content in all that I am and all that I have become in those eight years.

My name is Suzanne D, aka Karen in Wonderland and 8 years ago I was diagnosed with Churg Strauss Syndrome (CSS) which was renamed Eosinophilic Granulomatosis with Polyangiitis (EGPA) last year.   CSS is still used by most patients because by the time we say, “Eosinophilic Granulomatosis with Polyangiitis “ most people will have left the room.   Many of us refer to ourselves as, “Churgies”, a cute name for an insidious ailment.

Churg Strauss Syndrome is a form of Vasculitis. It affects both small and medium blood vessels and there is NO CURE. We become members of this elite Churg Strauss club which only has 2-3 new members for every million people that walk this earth. We find ourselves as outcasts by both our friends and family who can not comprehend why we can’t just, ‘get over it or be cured’ and our doctors who all too often google Churg Strauss Syndrome 5 minutes before they enter the exam room.

If you are ‘lucky’ enough to get a CSS diagnosis before it damages major organs in your body, consider yourself fortunate. Most patients do not since most doctors have only read about it in a textbook.   Many of us are told we have anxiety, acid reflux, allergic rashes or food allergies during stage one. During stage two, most of those inflicted know deep down that there is something wrong but getting a doctor to listen and put the puzzle pieces together is the hardest thing. We become a puzzle, a medial mystery, a case that belongs on Dr House, MD by the time we reach stage three.   Many of us are only diagnosed by the time some organ damaged has occurred. Many people with CSS are not diagnosed till too much damage has been done and their chances of survival are slim. I get very angry knowing that lives are lost due to the lack of awareness of CSS on the part of doctors, medical personal, and the general public.

We can be saved with quicker diagnosis and the induction of proper treatment. The survival rate is very high when proper treatment is started. We survive but we are not cured… but with proper follow-up and a cocktail of toxic meds we go on to live our lives.   These lives are never the same as before. We have less energy and because of the meds we take we end up with brittle bones, weight gain, diabetes, heart problems, kidney problems and breathing issues. But, we do live life… we learn to adjust to our new normal and sometimes learn that watching hummingbirds is a new pleasure in life.

PLEASE take a minute and learn about Churg Strauss Syndrome and Vasculitis by clicking on the following links. Educate yourself so that you can spot it and support  friends and loved ones. Kevin died of CSS when with early diagnosis he might have been saved. PLEASE stand up to your doctors if you think you have CSS vasculitis and go to a major vasculitis center as soon as you can for proper treatment.

CSS Organizations and Medical Centers

CSS on Social media

CSS and Vasculitis in Videos

Useful Web pages for CSS






2 thoughts on “CSS Awareness in Memory of Kevin

  1. CSS Family member

    ” I get very angry knowing that lives are lost due to the lack of awareness of CSS on the part of doctors, medical personal, and the general public.”

    So, you get angry that doctors and the general public have a general lack of awareness of a very rare disease that most people have never even heard of? Wow, expect much?

  2. karen in wonderland Post author

    Yes, I do expect a lot. I am the first to admit that.
    Vasculitis and Autoimmune illness are commonly misdiagnosed by doctors and I would like to see more doctors trained to recognize these illnesses. I think as a Vasculitis community we need to do more to raise awareness so it is found before an autopsy. We have come a VERY long way since the 1970’s but still have a distance to travel.
    For months, I was told I had anxiety and acid reflux…. when I knew something was seriously wrong. When I originally had nerve damage I was told it was carpal tunnel and given a wrist brace to wear. If I listened to those first medical professions and became complacent I might not be here today to raise awareness.
    So, YES, I do get angry at the lack of awareness and training of medical professionals. Yes, I do expect much…. and Yes, I do not plan on sitting quietly but instead I choose to raise awareness.

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