When I was first diagnosed and in the process of coming to terms with being chronically ill I wrote A LOT! Now that I have started this blog, I want to share some of those posts.
Some posts are funny, Some are sad and Some make you wonder how I woke up each morning and moved forward. These posts are my history, a part of me and weather they are good, bad or ugly they are part of who I am and have become.
Originally Written on : April 5th, 2007
(I was officially diagnosed on April 1st, 2007)
(this was before the name change to also known as eosinophilic granulomatosis with polyangiitis EPGA)
Funny how after months of doctors not knowing what was wrong with me, I now hear the term, “you are presenting with Classic Churg Strauss” from too many of them.
What is ‘Classic Churg Strauss’? And why I am one of those lucky few? And how would they know since I catch them using the internet to search for it and pulling down those dusty medical textbooks.
As defined on dictionary.com —
1. of the first or highest quality, class, or rank: a classic piece of work.
2. serving as a standard, model, or guide: the classic method of teaching arithmetic.
3. of or pertaining to Greek and Roman antiquity, esp. with reference to literature and art.
4. modeled upon or imitating the style or thought of ancient Greece and Rome: The 17th and 18th centuries were obsessed with classic ideals.
6. basic; fundamental: the classic rules of warfare.
7. of enduring interest, quality, or style: a classic design; classic clothes.
8. traditional or typical: a classic comedy routine.
9. definitive: the classic reference work on ornithology.
10. of or pertaining to automobiles distinguished by elegant styling, outstanding engineering, and fine workmanship that were built between about 1925 and 1948.
Now after reading all these definitions I have to come to realize I am NOT a car nor was I born between 1925 and 1948. Although I have Greek Ancestry I am not an antique (that I know of). This autoimmune disease has made me fight it but it has it has own rules so the warfare one is out.
I think I am of the highest quality and doctors seem to think my Churg Strauss is of enduring interest. They must because they keep wanting to see me in their offices.
Am I a classic comedy routine? Well, I tend to make the doctors laugh, even if it is a nervous laugh sometimes.
Definitive… am I definitive? Well if we were playing Churg Strauss BINGO I would not need the free space to fill in my row. I can picture it now…
Time to get out your BINGO card and play the new and exciting game of Churg Strauss Bingo. Tonight’s jackpot is a lifetime of prednisone and oral low dose chemotherapy. We are playing by The American College of Rheumatology rules.
In order to fill your card you need to fill in 4 criteria and you may use the free middle space.
If you want the special autoimmune jackpot then you need 5 squares. Go for 6 and get the wildcard prize.
Remember we are not playing any regular vasculitis game here; this is the highly specialized Churg Strauss BINGO. Many will play few will win. Be the 2.4 per million. Play today.
And the elusive Wildcard card is…..biopsy containing a blood vessel with extravascular eosinophils.
I got BINGO with the wildcard as of today. What are your scores?
It’s been 8 years since I wrote the above post on Churg Strauss Bingo but the diagnostic criteria is still correct today. Notice how it never mentions you have to be ANCA positive to have CSS. This is a common misconception about CSS but as far back as 1990 it was recognized that you can be ANCA positive or negative and still have a definitive diagnosis of Churg Strauss Syndrome (CSS) now which changed got renamed in 2011 to be descriptive of the symptoms to Eosinophilic Granulomatosis with Polyangiitis (EPGA).
I wish once you got a BINGO your prize was a cure. There is no cure, at this time, for CSS. It is considered to be a Chronic Illness and will go through periods of Flares (active disease) and quiet periods. Most CSS patients will be on some sort of ‘control’ medicine for the rest of their lives, these meds may be to control the CSS and keep it quiet or to deal with the damage to the blood vessels and organs that CSS caused.
With each passing year, I see more research into Vasculitis, which CSS is a form of, and progress is now being made to pinpoint something genetically. Years ago we only had Cytoxan but now we have more biological meds like Rituxan and now is testing is a drug called Mepolizumab (clinical studies now being conducted for patients with relapsing or refractory Eosinophilic Granulomatosis with Polyangiitis). They have even found out that HLA-DRB4 gene positivity may be a genetic risk factor for the development of Churg Strauss syndrome and may increase the likelihood of vasculitic manifestations of the disease.
Posted in CSS, Uncategorized by karen in wonderland with .