Author Archives: karen in wonderland

When Is Snake Oil A Good Thing?

ˈsnāk ˌoil/ noun North American informal noun: snake oil; noun: snakeoil a substance with no real medicinal value sold as a remedy for all diseases. a product, policy, etc. of little real worth or value that is promoted as the … Continue reading

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It’s Hard To Be Brave, When…

When you suddenly become sick with any illness you find yourself feeling very small.  Navigating the world of doctors, nurses and other medical personal is like entering a strange new world.  You find yourself losing your voice and unable to … Continue reading

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Giving Tuesday 2016

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 … Continue reading

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Light at the End of the Tunnel

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 … Continue reading

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EULAR Report and informative Webinar on ANCA Vasculitis Treatment

We have a rare disease and it is up to us to make sure we get the best medical care and part of that is self education.  IF you read only one thing about your ANCA related Vasculitis all year… … Continue reading

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Living well with EGPA: The healing process

Living well with EGPA (Eosinophilic Granulomatosis with Polyangiitis ) The healing process (EGPA) Eosinophilic Granulomatosis with Polyangiitis is also known as (CSS) Churg Strauss Syndrome Written by Shawna Being diagnosed with EGPA brought many things.  Relief because I finally knew … Continue reading

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Some good articles for all CSS/EGPA patients to read

Just sitting around resting and came across some really great articles for CSS/EGPA patients.   Some of these I may have shared before but they are worth rereading. Feel free to share and bookmark so you can read now or later. … Continue reading

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mepolizumab, reslizumab, lebrikizumab, tralokinumab, dupilumab

The UMABS have arrived! There is a group of new medicines hitting the market that may help patients with EGPA / CSS.  Since Asthma is such a large component in many patients with CSS these are mostly targeted at the … Continue reading

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It’s hard…. what Dr’s never tell you

Although this is written for CVID (people who are receiving IG replacements) — this really is an article for anyone with a chronic, incurable illness. After reading this I felt like the feelings I was having recently are not mine … Continue reading

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CSS /EGPA December Awareness Post

December’s Churg Strauss Awareness Post is up and ready for sharing. Join Dennis L. on his journey. Is That A Horse Or A Zebra? by Dennis L. When I asked myself why I volunteered to write something about my history … Continue reading

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