When a doctor tells you that you have a rare syndrome called Churg Strauss Syndrome, there is an immediate reaction of “What’s that?” With more explanation you realize just how rare it is—affecting far less than .01% of the population. Most people have never heard of it, and most doctors know very little, if anything, about it. One plastic surgeon said, with a twinkle in his eye, “I skipped class that day.” Most doctors will never see a case of CSS.
Fortunately, there is information and support for CSS patients through the Churg Strauss Syndrome Association and the Churg Strauss Syndrome International Support Group message board (or the CSSISG) .
The Churg Strauss Syndrome Association was formed in 2004 and is a registered charity in the USA. The CSSA website provides CSS relevant news and information. In addition, it provides a forum for patient stories. The CSSA actively supports research by publicizing and promoting current research from around the world. The CSSA raises awareness of this very rare disease by distributing information at medical conventions. Tracking reports show that CSSA website has been accessed by people from over 70 countries, including: the United States, the United Kingdom, Canada, Australia, Italy, Ireland, the Netherlands, France, Germany, Japan, New Zealand, Finland, Greece, Brazil, India, Spain, Sweden, Belgium, Korea, Romania, Israel, Portugal, Switzerland, the Czech Republic, Mexico, South Africa, Norway, Argentina, the Philippines, China, Hong Kon g, Poland, Turkey, Taiwan, Singapore, the Russian Federation, Iran, Egypt, Denmark, Saudi Arabia, Hungary, Puerto Rico, Thailand, Malaysia, Indonesia, Slovenia, Colombia, Peru, Austria, Chile, Iceland, Ecuador, Jordan and many, many other countries too numerous to list.
The CSSA developed an informational brochure for patients and medical professionals. This brochure has been helpful in explaining the disease to family and friends. In addition, it has helped inform and raise awareness among local physicians who may never have seen a patient with the disease before. The brochure has been published in both the USA and in Europe. Gloria Pieterse, from Ireland, has had some printed at her own expense and sends them to anyone who requests them. The CSSA distributes them in the Americas, while Gloria sends them elsewhere around the world.
A wonderful support group of CSS patients has formed, sharing experiences in an online list serve the CSSISG, making the rarity of this disease seem much less daunting. On the list there are both men and women, parents of children with CSS, people diagnosed years ago and people newly diagnosed. Emotions run the gamut from fear, to discouragement, to frustration, to joy at decreasing the ever-present prednisone and reaching remission. The list has such a variety of people, ranging from very knowledgeable and well-versed in the current medical literature to a wonderful humorist, Karen in Wonderland, who explains drolly how she knows that Santa has Churg Strauss. The list even has a very useful member who is a board certified internist, a CSS patient herself. The constant stream of messages reduces any feelings of isolation. It is like a steady stream of messages from friends who care about you even though they may be an ocean away.
Where do most CSS patients live? All over the world in an amazing array of countries, on nearly every continent, and in most of the states in the USA. CSS is decidedly a worldwide disease, yet still rare. The US number seems high, but when compared to a total population of 300,000,000+ it is a very small percentage. It certainly is a plus having a good group of internet friends who understand the syndrome.
Being on the CSS list serve has taken much of the fear and loneliness out of having this disease. The more information we have the better, and the more we can support one another, the more help we give. We treasure our friendships throughout the world and welcome new CSSers at any time.