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This page will link to numerous resources for vasculitis information.

One of the best is the Vasculitis Foundation http://www.vasculitisfoundation.org

NM Vasculitis Doctors Form (Right here on this chapter's website, we are compiling a list of NM health care professionals with experience treating vasculitis.)

Patient Resources

When there is no specific patient resource for a disease, go back to List of Diseases on the VF website for more info. Some of these links were copied from that page, and put here for your convenience. As more resources are identified, this list will grow.

There are some good fact sheets, tutorials, and databases, and I will link to them. However, ultimately you and/or your patient advocate will have to learn how to research your condition. So I will start with some of the medical information search tools. I will gradually post more information about online research tools, websites, search engines, and so forth.

Medical Information Search Tools

Learning to do good research gives you a way to empower yourself and put another set of eyes on the problem to avoid mistakes. Vasculitis patients and advocates should do their homework so they can be ready to ask good questions when they go to the doctor.

Never try to diagnose yourself. Always see a physician with any questions about your health issues.

NIH - Health Information - http://health.nih.gov/ - Founded in 1887, the National Institutes of Health today is one of the world's foremost medical research centers, and the Federal focal point for medical research in the United States. NIH - Institutes, Offices & Centers - http://www.nih.gov/icd/

PubMed - http://www.pubmed.gov/ - a service of the U.S. National Library of Medicine that includes over 18 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.

Vivísimo ClusterMed - http://demos.vivisimo.com/... - a demonstration of the Vivisimo Velocity search engine technology, that returns clustered results from PubMed.

PubMed Central (PMC) - http://www.pubmedcentral.nih.gov - the U.S. National Institutes of Health (NIH) free digital archive of biomedical and life sciences journal literature.

WebMD Health Search  - vasculitis - http://www.webmd.com/search/... - The WebMD content staff blends award-winning expertise in medicine, journalism, health communication and content creation to bring you the best health information possible. Our esteemed colleagues at MedicineNet.com are frequent contributors to WebMD and comprise our Medical Editorial Board. Our Independent Medical Review Board continuously reviews the site for accuracy and timeliness.

Zotero - http://www.zotero.org/ - Zotero is an open-source Firefox extension to aid the collection, management, and use of research sources. Zotero is compatible with PubMed, HighWire Press, Google Scholar, and dozens of other databases and library resources accessible by Internet browser. [As you gather information from websites, books, articles, and so forth, you will need a place to collect all this data. Zotero stores information in a database that resides on your computer. As you collect data, this tool will make it easier to collect articles and books, then later you can search that information, even when you are offline. You can also generate your own customized bibliography of those research sources. Only works with the Firefox browser, but well worth it. -JWC]
You can read an independent review of Zotero here: Zotero - Reviewed by Thomas E. Vanhecke, MD

Wikipedia - http://en.wikipedia.org/ - Wikipedia, the free encyclopedia . Wikipedia (pronounced /ˌwiːkiˈpiːdiə/ or /ˌwɪkəˈpiːdiə/) is a multilingual, Web-based, free content encyclopedia project." [Using Wikipedia is like walking out onto a busy street, selecting people at random, and asking them your research question. You might get good information and you might get bad information. So use Wikipedia with great care. many of the articles are very well written, so it is often a great place to start a new search, but do not rely on it alone. -JWC]

Google - http://www.google.com/ - and Google Health - http://www.google.com/health/ - [Google is the often cited search tool that most people who have ever used the Internet for anything know about. What most people do not know is that health related searches make up a huge portion of the every day traffic on Google searches. Google has enhanced their search engine to make it even more friendly for searching health information, and they also have a very nice service now called Google Health, which is being developed and you should check out just to be in the know. (Requires a Google Account) -JWC]

MEDgle - http://www.medgle.com/ - search your symptoms . MEDgle is an online information and educational service. With the thousands of articles and sites available, finding relevant medical information is difficult. MEDgle's goal is to make medical information easily and intuitively accessible for the benefit and betterment of everybody. Simply: search, learn, and thrive. [I have only recently become aware of MEDgle, but I can already tell it is on the right track. They reference other good sources with which I am already familiar. -JWC]

Bruce's website - AUTOIMMUNE VASCULITIS (AV) & WEGENER'S GRANULOMATOSIS  (WG) - http://www.wegenersgranulomatosis.net/ - Bruce (alias = "Blades") is a Wegener's Granulomatosis patient who has compiled an impressive collection of research and experiential knowledge about not only his condition, but also vasculitis in general. I recommend you all read through it and learn what you can from it. He is doing what this website proposes to do, and he has been at it longer. His collection of pages and links is a great resource.

Prescription Medicines


MedlinePlus: Medicines - http://www.nlm.nih.gov/medlineplus/medicines.html - When a medicine's benefits outweigh its known risks, the U.S. Food and Drug Administration considers it safe enough to approve. Both prescription and over-the-counter medicines must be approved before they can be sold in the U.S. To reduce the risk of a problem, follow the directions carefully when taking medicines. Make sure that your health care provider knows all of the medicines and supplements you are using. Also, make sure to mention if you are pregnant or nursing. Some medicines can hurt your baby. To learn more about the medicines you take, this is a good site to go first. The information is presented in a way that is comprehensive, but also reasonably clear.

RxList - http://www.rxlist.com/ - The Internet Drug Index for prescription drugs and medications
RxList.com is owned and Operated by WebMD and part of the WebMD network.
RxList is an online medical resource dedicated to offering detailed and current pharmaceutical information on brand and generic drugs. Founded by pharmacists in 1995, RxList is the premier Internet Drug Index resource. Our knowledgeable staff at RxList continuously reviews and updates the site with articles written by pharmacists and physicians and data provided by credible and reliable sources like the FDA and First Data Bank, Inc. to ensure the most accurate and beneficial information is provided. [Thanks to blades49456 for referencing this in a savvy post.--JWC]

DailyMed: About DailyMed - http://dailymed.nlm.nih.gov/dailymed/about.cfm - DailyMed provides high quality information about marketed drugs. This information includes FDA approved labels (package inserts). This Web site provides health information providers and the public with a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling as found in medication package inserts. Other information about prescription drugs may also be available. NLM regularly processes data files uploaded from FDA's system and provides and maintains this Web site for the public to use in accessing the information.

Epocrates  - http://www.epocrates.com/ - [Epocrates is an excellent resource for looking up your meds. Get a free account now and find out what you did not know about your medications. Plus, you can check the drug interactions. Try it now and see what I mean.] Epocrates’ solutions support clinical decisions and help enhance the quality and safety of patient care. More than 500,000 healthcare professionals, including one in four U.S. physicians, use Epocrates’ innovative mobile and web-based products to help them reduce medical errors, improve patient care and increase productivity. The company’s trusted clinical content is developed by physicians and pharmacists and is continuously updated to keep users informed and up to date. [In basic terms, these are databases of medical information, mostly about the medications, contraindications, etc. These are the same tools many doctors use to determine if a given set of medications are safe. As a patient, you can get a free acount and double check your own treatment plan. This is not for the fient of heart. -JWC] As with any medical information, please do get the advice of a doctor when you interpret this information.

USFDA Division of Drug Information (DDI) - http://www.fda.gov/cder/Offices/DDI/default.htm - The Division of Drug Information is the Center for Drug Evaluation and Research’s (CDER's) focal point for public inquiries regarding human drug products.  We are dedicated to serving our global community by assisting all inquirers and providing useful, accurate information in a timely manner. [This is more than most people will ever want to know about the medications they may take. But if you are looking for information about a product that is not yet FDA approved, then this site may get you the information you are looking for. --JWC] Related: FDA Drug Information Pathfinder - http://www.fda.gov/cder/Offices/DDI/pathfinder.htm.

Natural, Alternative, and Complementary Medicines

An introduction to CAM - University of Maryland Medical Center (UMMC) - http://www.umm.edu/altmed/articles/cam%20introduction-000346.htm
"What is CAM?

Complementary and alternative medicine (CAM) is a term used to describe a diverse group of healing systems that are not presently considered to be part of mainstream medicine. The goal of conventional medicine is to locate the physical source of a particular disease and then remove it. For example, if a patient has some sort of infection, a conventional doctor would probably prescribe a specific antibiotic to kill the invading bacteria. CAM practitioners, on the other hand, take a more "holistic" approach to healthcare. They believe that health and disease involve a complex interaction of physical, spiritual, mental, emotional, genetic, environmental, and social factors. In order to treat a disease or simply promote good health, CAM practitioners treat the whole body by taking all of these factors into account.

In the United States, this holistic approach to health has been labeled "alternative" for a variety of scientific, cultural, and political reasons. In many cases it is very difficult to scientifically test alternative practices, such as acupuncture, in the same way that certain conventional practices, such as medications, are tested. Although alternative therapies are often based on hundreds -- in some cases thousands -- of years of experience, the conventional medical community relies heavily on scientific evidence (rather than clinical experience) when evaluating the safety and effectiveness of a particular therapy. For this reason, many alternative practices that have not been thoroughly tested (or cannot be thoroughly tested) are considered "unscientific" by modern Western standards. In addition, many non-Western healing practices are not taught in United States medical schools, available to patients in U.S. hospitals, or even covered by health insurance in the country."

[Just as with chemically isolated compounds, which we think of as prescription drugs, the alternative compounds are being investigated in Clinical Trials by various agencies. Still, the research is

Many doctors may recommend to avoid natural remedies because they have not been tested as thoroughly, and the manufacturing processes are not uniformly regulated. However, people do use them, and many people find them effective for certain things. You should always consult with your doctor before adding a new treatment to your overall treatment plan. You should also learn as much as you can about the remedy you are considering before you try something that might contraindicate with your other medications or at least change the mix. In some cases, the side effects of a natural remedy are just as complex as with an isolated chemical compound. In some cases, it can even neutralize your primary medication and render both useless. Learn as much as you can before you talk to your doctor. - JWC]

National Center for Complementary and Alternative Medicine - http://nccam.nih.gov/ - "The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). We are 1 of the 27 institutes and centers that make up the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services."

About Clinical Trials and CAM [NCCAM CAM Basics] - http://nccam.nih.gov/clinicaltrials/factsheet/ - "Clinical trials are an important part of the medical research process. Through clinical trials, scientific discoveries can lead to better ways to prevent, detect, and treat diseases and medical conditions. This fact sheet will provide you with an introduction to clinical trials and to trials of complementary and alternative medicine (CAM). " [I am linking to this page specifically, because this offers a good intro to the science behind CAM, and also a decent overview of what Clinical Trials are all about. People often ask, "Why are they so slow?" The answer is, "Because they are so thorough." - JWC]

Complementary and Alternative Medicine Index (CAM)
- University of Maryland Medical Center (UMMC) - http://www.umm.edu/altmed/ - [This index is somewhat awkward to navigate, and the first article is actually responsible for the "Introduction to CAM" information above. Still, there is a lot of information here, and tons of links to even more informtion, so I include it for your consideration. - JWC]

Natural Medicines Comprehensive Database - http://www.naturaldatabase.com/ - : Scientific Gold Standard for Evidence-Based, Clinical Information on Natural Medicines. I learned about this at the 2008 International Vasculitis Symposium. NaturalDatabase.com is the accepted source for doctors looking up information and scientific Effectiveness Ratings about natural remedies. When you want to learn more about a particular natural product, this is the place to go. This is not a free service, so consider when and how to do your research.

MedlinePlus: Drugs & Supplements - http://www.nlm.nih.gov/medlineplus/druginformation.html - Drugs, Supplements, and Herbal Information
Prescription and over-the-counter medication information is from AHFS® Consumer Medication Information. Information on herbs and supplements is from Natural Standard©. This free service is provided as part of the extensive network of NIH websites provided by the National Library of Medicine. Your tax dollars really are at work in this case. Not as comprehensive as NaturalDatabase.com, but still good information.

Vasculitis Information Pages

Vasculitis (General information)

Vasculitis Research Centers in North America

Autoimmune and Rare Diseases Organizations

Vasculitis (Specific diagnoses)

[I would really like to expand this section. If you have links in your bookmarks that you have found especially helpful for your diagnosis, please let me know about them so I can share them with others.]

Behcet's Disease

Buerger’s Disease (Thromboangiitis obliterans)

Central Nervous System Vasculitis (CNS) or (PANCNS)

Churg Strauss Syndrome
Cryoglobulinemia

Giant Cell Arteritis (Temporal Arteritis)
Henoch-Schönlein Purpura
Hypersensitivity Vasculitis
Kawasaki Disease
Microscopic Polyangiitis
Polyarteritis Nodosa
Polymyalgia rheumatica
Rheumatoid Vasculitis
Takayasu’s Arteritis
Wegener's Granulomatosis

Medical Professional Associations

Specific organ information

Symptoms and Treatments



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