Useful Resources/Websites for Churg-Strauss Syndrome

If you or a loved one have recently been diagnosed with Churg-Strauss Syndrome, it is only reasonable to expect that you will have many doubts and concerns. This is a rare condition that affects only a minority of people, as approximately 5 out of every 1 million people are diagnosed with this disease. However, the fact that this is a rather uncommon condition doesn't make things easier for those affected and their relatives. It might be the case that your family doctor will not be able to help with all your questions and concerns, and specialists have a tendency to use medical jargon that is hard to decipher and not always helpful.

Having access to information in plain English can help you better understand this condition and therefore be better equipped to cope with it. The Internet is a great source of information, but not every website is reliable. Below you will find a list of reputable online resources that can help answer your questions about Churg-Strauss Syndrome.

Medical Resources

MedicineNet

By visiting www.medicinenet.com/churg-strauss_syndrome/article.htm, you can find the answers to several common questions about Churg Strauss Syndrome, mainly those related to the symptoms, causes, treatments, and prognosis of patients affected by this condition.

The Mayo Clinic

At www.mayoclinic.com/health/churg-strauss-syndrome/DS00855 you can find information about the risk factors associated with this condition, the possible complications, practical advice on how to prepare for tests, and a list of lifestyle remedies that you can implement to cope better with the disease.

The John Hopkins Vasculitis Centre

Go to www.hopkinsvasculitis.org/types-vasculitis/churgstrauss-syndrome-css/ to find reliable information on this condition offered by one of the leading medical centres that specialise in treating this disease.

Personal Stories and Support Groups

Churg Strauss Syndrome - My Story

Here you will find a detailed personal account of a New York-based patient who was diagnosed with the syndrome after being affected with a skin rash. The author spent 12 months battling his condition, and in his website he offers information about the dietary changes that he found helpful, the drugs that were prescribed and their side effects, the flare ups he experienced after remission, and the routine medical care that he follows to stay disease-free.

Churg-Strauss Syndrome Association

Available at www.cssassociation.org, this website is run by a not-for-profit association devoted to empowering patients and their families through reliable advice and information. This website offers a wealth of practical tips that cover all areas of the life of those affected by the disease, as well as a directory of online message boards, a list of patient groups in several countries, dozens of honest patient stories, and a comprehensive section that details the symptoms, tests, and treatments related to Churg-Strauss Syndrome.

Vasculitis UK

This site (available at www.vasculitis.org.uk) is run by the Vasculitis Trust, which aims to raise awareness about Churg Strauss Syndrome and related medical conditions. The trust is made up of a network of support groups from all over the UK, and also offers support for those who wish to start a local group. The site also offers access to the trust's bi-annual newsletter, where you can find articles written by medical professionals using plain English, as well as many inspirational stories from patients.