February 2016 — CSS/EGPA Awareness
Every Month the Churg Strauss Syndrome (CSS) / Eosinophilic Granulomatosis with Polyangiitis (EGPA) publish a personal story about living with this life changing chronic ailment. This is done to bring awareness to our disease in an effort to let the world know we exist and we want to help others obtain earlier diagnoses. It is a documented fact that earlier diagnosis leads to better outcomes in CSS/EGPA.
This project was started by a very brave CSS warrior named Glenys in memory of a CSS warrior we lost all too soon.
Kevin Selig was diagnosed in January 2014 with Churg Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
Unfortunately this month begins with great sadness for the CSS community. James Allen Christoffer, 48, died unexpectedly from complications of CSS/EGPA Saturday, January 16, 2016 at Mayo Clinic Health System. Our hearts and minds go out to his wife and daughter at this time of great sadness.
He wife has posted this message about Jim.
“Hello CS friends. It is with deep sorrow that I am posting…. Jim went to the ER last night with horrible chest pain and wheezing. After 3 hrs of EKGs, X-rays, blood tests.. We ruled out heart attack, blood clot to the lung, etc. Pain Meds didn’t touch it and we didn’t know what to think. Decided to do a cat scan of the chest. He sat up after it and immediately lost conscienceless. They worked on him for an hour or so before they determined they could do no more.
He had been feeling pretty damn good, positive attitude, and starting to get onto the tread mill. Had come down on steroids and thinking he might be on the trial drug (v.s. the placebo). So this is just so messed up… But yet so typical of this disease. How many times had we been to the ER with something bizarre and new… Is it the disease or is it a side affect…
The coroner called this evening with his interpretation of the autopsy–CSS had taken its toll on Jim‘s body…”
These are the reasons we do these monthly posts! These are the reasons we try to let our stories be known. Churg Strauss Syndrome (CSS) / Eosinophilic Granulomatosis with Polyangiitis (EGPA) might be rare but Doctors and patients need to be educated about this chronic autoimmune ailment so more research can be done so we no longer find ourselves posting remembrances about someone’s life that ended too soon.
February 2016 —
We have the honor of reading about Art’s journey with diagnosis and how he he reminds us we only have one life and we need to make the best of it.
It was the 1st Monday in October I developed a cough. I put this down to all the dust but it never went away. On my return to the UK it was still there and when I trained it got even worse as though I was a heavy smoker. After many visits to the medics I was given an Inhaler and told I had Adult onset asthma.
I had to give up my favourite past time martial arts which I have been doing from age of 12. I accepted this as my lot and got on with it but I couldn’t stay away so kept it minimal and did more running.
By 2010 the asthma was uncontrolled and I was in and out of A&E for a quick steroid burst. which was happening more and more. In 2011 I developed Nasal Polyps and by god the pain in my head was like someone trying to drill from the inside out I was nearly in tears.
I had a FESS to remove the Polyps and the relief was amazing. Things were good all under control and then in December 2014 I felt unwell again. Bloods showed high EOS count and Doctors were not sure what was going on. I developed cramp in my calfs when walking and had to rest, my asthma came back with a vengeance and I was coughing at night.
In Feb 2015 I took myself to A&E as I felt really bad and knew my body was telling me you ain’t good. At A&E they took my bloods did chest x-ray and gave me meds and kept me in. the Dr on call that evening said there is a syndrome but it is so rare you won’t have it.
The next day a consultant came to see me and said how do you feel and I said OK and he said you have Churg Strauss Syndrome (CSS / EGPA).
Then I googled CSS and that was the worst thing I could have done. I scared myself (google needs to be updated ) After doing some research and advice from other Churgies (this is a term used within the Churg Strauss Strauss community to refer to ourselves). I went on Paleo diet for a few months to get my gut in order and tapper my meds. I now clean eat but do like treats. I avoid sugar and dairy whenever possible.
I have my blood checked every month to keep tabs on the CSS. Rest when my body tells me and try not get stressed.
I have been blessed to be diagnosed so promptly. I have slight scaring on my heart, it’s not that bad but I am not allowed to do competitive sport (bugger). I have never missed a day off work and I have changed jobs twice since diagnosis and I wont let this syndrome stop me from pursing my aspirations.
I have had the best support from family and from the people on this site (referring to the Churg Strauss Face Book Friends Group), as our collective knowledge is a major factor in coping with this syndrome.
I wish you all well and please live your lives, we only have one and we need to make the most of it.
Ask for advice from people as their experience and knowledge can be of great comfort and I personally would like to thank Andy Rz I owe that guy a beer or two.
by karen in wonderland