Other Organizations
Other organizations can be extremely helpful to those with Churg Strauss Syndrome. Some are “umbrella” organizations providing information and support for groups of diseases with common features, while other groups focus on diseases similar to CSS. Many of these groups are identified by acronyms while others are subgroups of other organizations, making this all a bit difficult to sort out.
The Office of Rare Diseases (ORD) is a government agency established in 1993 and is part of the National Institute of Health (NIH). ORD coordinates and stimulates research on rare diseases, including Churg Strauss Syndrome. Their website has information about research and clinical trials, scientific conferences, various rare diseases and their support groups, and information about resources to help with patient travel expenses. In addition, ORD helps to empower patient advocacy groups to better meet the needs of their members.
The National Organization for Rare Disorders (NORD) is somewhat similar to ORD, but it is a non profit, non-government agency and is a coalition of voluntary health organizations dedicated to serving the needs of patients with rare diseases, their families, and assisting the organizations that serve them.
The Rare Disease Clinical Research Network (RDCRN) was established by the National Institute of Health (NIH) in November, 2003 with a $51 million grant for funding several Rare Disease Clinical Research Centers (RDCRCs) and a Data and Technology Coordinating Center (DTCC). One of the research centers funded is the Vasculitis Clinical Research Consortium (VCRC). The VCRC website has information about vasculitis in general as well as information about Churg Strauss Syndrome in particular. Its focus will be to foster and facilitate clinical research in the inflammatory vasculitides to gain a better understanding of these rare diseases. The VCRC believes that patient support groups are important partners in clinical research and has worked with vasculitis patient organizations since its inception. One very important component of the VCRC website is a patient registry which will aid in research of our rare disease. The registry is completely voluntary and confidential. The Churg Strauss Syndrome Association has provided this link directly to the registry to make it easy to register. Only through research will we be able to learn more about CSS, find better treatment and possibly, someday, find a cure.
According to The American Autoimmune Related Diseases Association’s mission statement, “… AARDA sponsors physician’s conferences, research, legislative advocacy and a national awareness campaign to bring a national focus to autoimmunity.” They have a wealth of information about autoimmune diseases.
Dr. Carol Langford, who is on our Medical Advisory Board, is a Director of the Cleveland Clinic Center for Vasculitis. This web resource has a wealth of information about vasculitis, in addition to information about Churg Strauss specifically. Information about Churg Strauss Syndrome can be found under the link: “What We Treat”. There is a helpful diagram showing an inflamed blood vessel as well as easy to understand information about CSS.
The Johns Hopkins Vasculitis Center, where Dr. Philip Seo and Dr. Stuart Levine serve as Directors and also serves on our Medical Advisory Board, has an excellent website with information about all kinds of vasculitic diseases, a great glossary of terms, and much information about CSS (click on the “Types of Vasculitis” link at the top of the page). The site contains some photographs showing physical manifestations of the disease. There is also a link to research and clinical trials being conducted at the Center.
The Mayo Clinic where both Dr. Ulrich Specks and Dr. Karina Keogh are associated with has good information on a section about vasculitis. This site includes, among other things, information about causes, complications and coping skills. Both of the doctors have done research in the vasculitides, including CSS.
The Cincinnati Children’s Hospital has an excellent clinic for eosinophilic disorders. Their website has information about eosinophilic gastroenteritis and Hypereosinophilic Syndrome which may be helpful for patients with CSS. They have a good question and answer section as well as information about research.
The American College of Rheumatology has good information for patients about medications, diseases, and a list of assistance programs.
Orphanet has a good description of CSS.
CNN Health also has good information on CSS.
The above list is comprised only of the medical and research facilities who have web information about Churg Strauss, vasculitis or related conditions. There are, of course, many respected medical facilities that treat the disease are are not yet listed here.
Other Patient Groups
Churg Strauss International Support Group — Information and a great list service where members can read and post messages.
Arbeitskreis Vaskulitis — A German Support Group for people with vasculitis. English translation is also available on this site.
The Vasculitis Foundation, formerly the Wegener’s Granulomatosis Association, has evolved into an umbrella organization for all fifteen of the vasculitic diseases, including Churg Strauss Syndrome. The VF was founded in 1986 and now has over 4,000 members worldwide. The VF, the only vasculitis patient support group in the world, provides many services to advance the cause of vasculitis and to support vasculitis patients everywhere. The VF promotes and funds research, and provides a bimonthly newsletter, up to date information on its’ website, patient and physician information packets, an 800 telephone number, support groups, and patient symposiums. The VF needs your help in continuing this good work and Churg Strauss Syndrome patients are strongly urged to become members of the Vasculitis Foundation.
Polyarteritis Nodosa, another disease related to CSS, also has a good website. The website was founded in 1999 by Ed Becker and now has close to 400 members members. It has helpful links to doctors who specialize in vasculitic diseases as well as a live chat feature.
Bruce MacDonald is known to everyone on the CSSISG by the name of [email protected]. He tirelessly tracks down all research pertaining to Wegener’s and shares whatever is relevant with the CSSISG subscribers. His webpage can be found here.
The Lauren Currie Twilight Foundation. The LCTF was established in October 2010 in the memory of Lauren Currie who died from Vasculitis and specifically the rare condition, Wegener’s Granulomatosis (GPA) at the age of 15. The Foundation is committed and focused on the following objectives: To raise and maintain a national awareness of vasculitis; to fund and produce educational and guidance material on vasculitis; to provide grants for vasculitis research.
The Vasculitis Foundation Canada.
Formerly the Stuart Strange Vasculitis Trust, the Vasculitis UK membership consists of a national network of support groups, helping the Trust to achieve its aims, offering support to sufferers, their families and friends both at home and abroad.
Medications
Following are some interesting and helpful sites about some of the medications used to treat Churg Strauss Syndrome.
Prednisone
The Johns Hopkins Vasculitis Center has good information about prednisone along with some photographs showing side effects.
MedlinePlus, which is a service of the U.S. National Library of Medicine and the National Institutes of health, has good information about this frequently prescribed drug.
Medicinenet has some information about prednisone.
There is a whole book called Coping With Prednisone: It May Work Miracles But How Do You Handle the Side Effects
(*And Other Cortisone-Related Medicines) by Eugenia Zukerman and Julie Ingelfinger. It can be ordered online from Amazon.com or Barnes and Noble.
Cytoxan
Again, the Johns Hopkins Vasculitis Center has great information about this drug.
The American College of Rheumatology has information about Cytoxan.
Imuran or Azathioprine
The American College of Rheumatology.
Leukotriene Receptor Antagonists- zafirlukast (Accolate®) and montelukast (Singulair®)
Descriptions of CSS and Vasculitis
Article from medicinenet.com
Article about Vasculitis in Arthritis Research Campaign website from the UK.
Orphanet description of Churg-Strauss
Information on TIAs (mini strokes) which may be caused by vasculitis by MedlinePlus.
Disability Programs
Disability programs by federal government
National Organization of Social Security Claimants’ Representatives
Social Security Disability – Frequently Asked Questions
Helpful hints about the application process
Other Financial Help
Information about financial assistance for medications from NeedyMeds.com
Although the National Institutes of Health (NIH) is not authorized to provide routine medical assistance or treatment funds, this website provides links to organizations that may provide aid for medical treatment.
Brief Biographies of the Doctors Who Defined Churg-Strauss Syndrome
Medical Tests
From Bruce MacDonald’s website – excellent
MedlinePlus WBC count
White blood cell count and differential
AllRefer.com health Urinalysis – what do abnormal results mean?
MedlinePlus ESR (sed rate)
MedlinePlus C-reactive protein