Patient Stories - CSS Association

David Hohmann and Denise Trachsel write about their journeys with CSS/EGPA

The CSSA is pleased to share two new patient stories by David Hohmann and Denise Trachsel. Both David and Denise are well known on the Churg Strauss message boards for their knowledgable and sympathetic posts and both write compelling stories sure to resonate with the CSS/EGPA patient community.

Reducing Steroids while on a Low Dose & Activating the Adrenal Glands By Marian Mesker

Tapering steroids (also called corticosteroids or glucosteroids) while at a high dose is often not so difficult, since in a way your body is oversaturated with them. However, at a lower dose some of your symptoms may return, especially when the steroid tapering is done too early or too quickly.

Coping With Prednisone. Reviewed by Christophe Declerck

A Note From Marion: Many people all over the world take high doses of prednisone (or related drugs) to treat their serious illness. Prednisone may be the only medicine available for their condition but it may also have devastating (physical and psychological) side effects.

Discussion among members of the CSSISG about ANCA tests

Most CSS patients are familiar with blood tests that measure eosinophils, CRP (C-reactive protein), and sed. rate. But what is the ANCA test? Furthermore, there seemed to be some confusion among CSS patients on the CSSISG message board as to how useful this test is in monitoring disease activity.

Patient- the true story of a rare illness. Reviewed by Marian Mesker

In the summer of 1992, on the eve of an American tour, Ben Watt, one half of the Billboard-topping pop duo Everything But The Girl, was taken to a London hospital complaining of chest pain.

My Churg Strauss Story

I had a chronic cough from 2005 for about two years. I was treated with Singulair and other things…nothing helped. In March 2007 my troubles really began, but I wasn’t diagnosed with CSS until July 2008. In March 2007, my palms starting itching me something terrible.

I’m Not Drunk, It’s Churg Strauss Syndrome

Like most of us, my pre CSS life seems idyllic. I was 56 years old, in a long term love relationship, had many friends and a busy social life. I worked out at the gym, did yoga and walked my dogs daily. I loved my body and my life and never gave a thought to my health which, with the exception of adult onset asthma was excellent. In early April 2007 my asthma became more severe than ever before.

Churg Strauss Vasculitis

My story starts January 9th of this year. My wife rushes me to the hospital with a 102 temperature and fever, which will not go down. The hospital told me that I have pneumonia. Okay, I can live with that. My past primary told you will have to stay off work for three weeks on disability.

Solving the Mystery of my Wife’s Illness

My name is Brian and my wife Alicia was diagnosed with CSS in September, 2007. We have two wonderful children, a daughter who is five and a son who is three. My wife started having symptoms of illness in December, 2006. It began with acute sinusitis, which lingered through the winter, the onset of asthma by springtime, and the development of ulcerative colitis in between.

My Search for a Diagnosis

I’ve always wanted to write something really fascinating and meaningful, something that really touches a person. The subject of Churg Strauss Syndrome was certainly not what I had in mind. But, such is life and this is where I find myself – writing about my search for a diagnosis.

Finally It All Makes Sense

The first time I ever heard the word eosinophils, a doctor was telling me that my eos were elevated, and I needed to stop a medication I was on. My records at this doctor’s office are missing since we moved away, so I can’t be certain, but the med may have been Singulair, which I did take at one time in the 90’s.

Read more … Finally It All Makes Sense

Kathryn’s Journey with Churg Strauss

Soon after I got married in 1990, I noticed that whenever I exercised, I would start coughing. I had no idea why this was happening as I had always been very healthy. It continued to worsen. My doctor dx me with exercise induced asthma and put me on albuteral. As the years passed it worsened to asthma year round regardless of what I was doing.

A Mom’s Story

My son, Kevin, developed asthma about 3 years ago. I thought it was strange, but he was going to an allergist and his doctor regularly, so I knew he was taking care of it. He said his asthma was resistant to common drugs, but there was a drug called prednisone that is a miracle – it works in a matter of hours to cure all of his problems.

Light at the End of the Tunnel

My name is Graham Shore. I was born in Sheffield, UK, and this is an account of my experience of Churg-Strauss Syndrome (CSS). Note that not all incidences of CSS are anywhere near as severe as my particular experience. I was born 27th December 1961. My earliest recollections of health problems are the usual run of measles, chickenpox, mumps but also severe anaemia. Apart from this, I was remarkably healthy and never even suffered with hay fever, let alone asthma.

An Unfamiliar Path In Life

Our family has been dealing for Churg Strauss (CSS) for many years now. My 13 year old daughter, Lauren, has CSS. Although CSS has been a part of our life most likely since Lauren was just a baby, it took many, many years to unravel the mystery of what was really wrong with Lauren and to finally get a firm diagnosis.

Read more … An Unfamiliar Path In Life

My 30-year story, so far!

I am now 51, have had three distinct diagnoses of CSS and since hindsight is 20/20, I now believe that my Churg Strauss actually started in my 20s. I have been reading the other stories on this site, and I am amazed at the similarities with my own experience. I will try to keep my story succinct, and I hope that it is helpful to others.

An Australian experience of Churg-Strauss Syndrome

Tony Smith, Bathurst (Central Tablelands of New South Wales). November, 2006 The diagnosis I got a ‘probable’ diagnosis of CSS (eosinophilic vasculitis) in August 2004. This came about as a result of my admission to Sydney’s Royal Prince Alfred Hospital, a major teaching institution beside the University of Sydney.

My story as a long term survivor of CSS

As one of the long term survivors of CSS, Jane Dion suggested that my story might be of interest. I was diagnosed with CSS 16 years ago, which means I’ve probably had it for 18 years. By nature I have always been fiercely independent, had a positive attitude to life and dealt with things in my own way. I have striven to know myself, take responsibilities, and generally be my own best friend and advocate.

East or West- Finding the Best Remedies to Beat My Illness

I can actually pinpoint the time when I realised that something was going badly wrong with my health to the summer of 2000. I was 46 years old, and although as a child I had asthma and a lot of ENT problems, by my early twenties I was fit and healthy and never gave my health much thought.

CSS In Germany, by Peter Zelewski

Peter Zelewski is a Churg Strauss patient in Germany. He is a founding member of the Vasculitis-Support-Group at Bad Bramstedt Clinic. The aim of this group is to give concerned ones as much information and support as possible. Peter is currently the speaker of the German Vasclitis Patient’s Support Group

CSS: Always searching for answers

July, 2006You know when you feel like everything is right with the world, everything is going the way it should, everyone is happy, etc? I think if/when you hit that point in your life, you’re bound for some troubling news. We’re put in these situations to really make us stop, and really think about how things REALLY are.

A Patient’s Perspective: Participating in the VCRC Patient Longitudinal Study

As a long time patient of Dr. Peter Merkel, who is the principal investigator of the VCRC, and as one of the founders of the Churg Strauss Syndrome Association, I was given an opportunity to become one of the first participants in the VCRC CSS Longitudinal study. This is my experience.

Life Begins at 40

Life should have been going well. I was turning 40, my three young girls were growing up and we had taken the plunge and moved to a beautiful island in New Zealand. We had so much to look forward to. So why was I feeling so tired and lifeless all the time? Was my life really over at 40?

My story about Churg Strauss Syndrome

’m Nic Goederond, I live in Eindhoven a city in the south of The Netherlands (Europe). I’m a teacher with a specialty in teaching children with learning disabilities at a secondary school. I got the definite diagnose of Churg Strauss Syndrome in November 2005, a biopsy taken from a nodule on my elbow proved the CSS at all points. In April 2003 I got the tentative diagnosis of Churg Strauss.

CSS by Janelynne. February 2006

Hi, my name is Janelynne. I am 55 years old and I have recently been diagnosed with CSS. I was unofficially diagnosed with CSS in September 2004 when hospitalized after being sick for 3 months and being treated with antibiotics, steroids, and inhalers by my primary care physician for sinus and upper respiratory infections.

Riding The Roller Coaster – by Ann Mazzullo, Febuary 2006

It all started with a persistent cough in the late spring of 2003. I had always been healthy and active; worked every day, sometimes taught aerobics in the evenings, exercised, and ate fairly well. I was a night owl who loved socializing with friends on weekends. I never saw the doctor except for regular check-ups once a year.

CSS in Italy, by Cinzia

I was to celebrate my 21st birthday when I was diagnosed with pneumonia.. “Nothing serious”, said the doctor. “You will be fine in a month “, he said. As a student of violin in the local Music Conservatoire, a month in a bed was a huge bother for my plans and commitments, but I thought I could wait.

CSS in the Czech Republic by Jan Pokorny January 2006

My name is Jan Pokorny. I live in Brno, in the Czech republic – a country in Central Europe. English is not my first language, so please apologize my mistakes. I was diagnosed with Churg-Strauss syndrome in December 1999, when I was 18 years old. But there was quite a long journey to getting this strange diagnosis. First of all I have to say that I have got asthma diagnose since 1997.

Pain, Prednisone, Prayer, Promises & Patience by Dawn M. DesJardin

I say that I got CSS between 9 & 10:30 p.m. on November 3, 2004. However, I was diagnosed with asthma in 1996 at the age of 59, and I had been to a doctor once or twice in 1995 because I “squeaked” when I exercised and when I laid down at night.

My Experiences With Churg Strauss Syndrome- by Maureen K

I have been ‘lurking’ since finding out about this group from a fellow CSS person in another yahoo group for several types of vasculitis (savvy) & decided that it was time to introduce myself. My CSS is related to my past history of allergy-related health problems that started to develop a year after I began to work part-time at a university library in1989 (after leaving the nursing profession).

CSS in Oregon- by Russ Crawley

My Name is Russ Crawley and I live in Salem, Oregon. I was diagnosed with Churg Strauss Syndrome in December, 2003.I have always been in the grocery business, working for over 20 years as a produce manager. Then in 2001 I began working with a smaller market as a meat manager.

Maureen’s Story

Churg Strauss Syndrome: I have had that “label” since I was 20 years old. Over the past 30 years it has come to mean different things to me – some good and some not so good. My history began with an initial diagnosis of Henoch-Schonlein Purpura when I was 15 years old. Not much was known about autoimmune diseases back in 1970. Prednisone was the treatment, and for me, it worked wonders.