This page will link to numerous resources for information about vasculitis, and also general medical knowledge. This page is an annotated index of links, so look for comments that will help you understand why I chose to include them. Good hunting!
One of the best places to start is the Vasculitis Foundation http://www.vasculitisfoundation.org.
Vasculitis Doctors Form (Right here on this chapter's website, we are compiling a list of health care professionals with experience treating vasculitis. Please click that link and anonymously tell us who your doctors are who already know how to diagnose and treat vasculitis. If everyone will do this, then all new patients will have an advantage, and when you need a new doctor, you will too.
Some of the top questions asked by patients are, "Do you know a good doctor?" and "Who do you see for that?")
List of Diseases on the VF website for more info. Some of these links were copied from that page, and then expanded 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 specific condition. So I will begin with some of the medical terms, and then talk about medical information search tools. Plan to visit this page again, because over time, I will post more information about online research tools, websites, search engines, and so forth.
I recommend you skim this education page and click on anything that might be of interest to you. Before you do, you might review two articles in order to get an overview about what to look for and how to sort through the information to find what is relevant. The two articles are, "MedlinePlus: Evaluating Health Information," and "Genome.gov: Finding Reliable Health Information Online." Be aware that many of the same resources they reference are already cited on this Education page in relation to specific research questions. Here are the recommended articles:
MedlinePlus | Evaluating Health Information - http://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html
Excerpt: Evaluating Health Information
"Millions of consumers get health information from magazines, TV or the Internet. Some of the information is reliable and up to date; some is not. How can you tell the good from the bad?
First, consider the source. If you use the Web, look for an "about us" page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital or a business? Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted? Be skeptical. Things that sound too good to be true often are. You want current, unbiased information based on research. -- National Library of Medicine"
genome.gov | Finding Reliable Health Information Online - http://www.genome.gov/11008303
Excerpt: Finding Reliable Health Information Online
"As Internet users quickly discover, an enormous amount of health information is available online. Finding accurate and reliable information on genetic and rare diseases among the millions of online sources is a difficult task for almost everyone. We hope these tips will help you perform searches more easily."
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/
Agency for Healthcare Research and Quality (AHRQ) - http://www.ahrq.gov/ - The Agency for Healthcare Research and Quality's (AHRQ) mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. Information from AHRQ's research helps people make more informed decisions and improve the quality of health care services. AHRQ was formerly known as the Agency for Health Care Policy and Research. [Although very broad in scope, this web site has a lot of patient consumer information that can help you develop your healthcare awareness so you can make more informed decisions. Like much of the healthcare world, there are very few shortcuts to doing your homework. --JWC]
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.
Diseases Database site index Diseases Database - http://www.diseasesdatabase.com/index.asp - "The Diseases Database is a cross-referenced index of human disease, medications, symptoms, signs, abnormal investigation findings etc. This site provides a medical textbook-like index and search portal covering areas including: Internal medical disorders, Symptoms and signs, Congenital and inherited disorders, Infectious diseases and organisms, Drugs and medications, Common haematology and biochemistry investigation abnormalities. ... This medical information is intended for education, background reading and general interest. The Diseases Database is not a diagnostic or clinical decision-making tool. Please consult your own licensed physician regarding diagnosis and treatment of any medical condition! Content is not asserted complete or error free, please see also our disclaimer."
National Library of Medicine - Medical Subject Headings (MeSH Browser) - http://www.nlm.nih.gov/mesh/2008/MBrowser.html - "The MeSH Browser is an online vocabulary look-up aid available for use with MeSH® (Medical Subject Headings). It is designed to help quickly locate descriptors of possible interest and to show the hierarchy in which descriptors of interest appear. Virtually complete MeSH records are available, including the scope notes, annotations, entry vocabulary, history notes, allowable qualifiers, etc. The browser does not link directly to any MEDLINE or other database retrieval system and thus is not a substitute for the PUBMED system."
[This resource could be confusing for some people, but it is just too good to leave off this page. I hope you will remember to always ask your doctor for advice, and not try to substitute research for good medical advice and treatment by a qualified doctor. I added the NIH MeSH 2008 Descriptor Data to each diagnosis listed below. The NIH MeSH database contains nuts and bolts medical descriptions that will help you learn alternate names for your condition, and see how it connects with other similar conditions. It is a good place to start for a new patient, and a good site for anyone to check out if they have not already seen it. You can also choose to search the keywords for just about any medical subject, disease, drugs, treatments, etc., but I stuck with just the disease definitions for this page. There were two that were not listed (Microscopic Polyangiitis and Rheumatoid Vasculitis), so I submitted them along with citations for consideration in future editions of the MeSH. To learn more about how it works, look for the About MeSH Browser links. -- JWC]
ClinicalTrials.gov - http://www.clinicaltrials.gov/ "ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals." [This is the cutting edge, the bleeding edge sometimes, of medical research. Some medical researcher finds something they want to test, and if approved, it goes to a clinical trial after the lab rats, and before it is submitted for FDA approval. Don't get your hopes up. Just because a promising new medication in in trials, it still takes several years usually before it is available for prescription by most doctors outside of the research environment. Clinical trials are inherently risky. That is why they are trials. They are testing the safety and efficacy of a particular treatment. --JWC]
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 Mozilla 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]
These services will bring the news to you. You just subscribe to the topics you are interested in, and they send you updates via Email.
MDLinx - http://www.mdlinx.com/ - MDLinx is an award-winning, practical medical information tool that busy physicians, healthcare professionals use to stay up to date with the latest research in the medical field. The company aggregates medical articles, medical journals, medical newsletters and research from more than 1,200 peer-reviewed journals and leading news media on a daily basis. [When you sign up, you get to choose the specific topics for which you want to receive newsletters by Email, and how often you want to receive them. --JWC]
WebMD Health Services - http://www.webmdhealthservices.com/ - WebMD Health Services provides comprehensive health management programs and benefit decision-support solutions for more than 250 of the country’s leading employers and health plans. [The key here is this is a paid service provided to organizations, like health insurance providers as one example. Not everyone will be able to get this one, but it is worth asking. You may already be eligible, but just don't know about it, so ask your health plan provider if there is a subscription available to members. You might only need to provide them with an Email address to start receiving these useful articles. --JWC]
MedicineNet - http://www.medicinenet.com/content_solutions/article.htm - MedicineNet, Inc. is an online healthcare publishing company, creating proprietary consumer information. Since 1996, MedicineNet.com has provided consumers and organizations with nationally recognized, doctor-produced health and medical content. [This service is also associated with WebMD, and is accessible to all Net users via RSS feeds. You can access RSS feeds with several applications. My recommendation for the uninitiated is the Google Reader (http://www.google.com/reader/), which is free and does not require installing anything. --JWC]
Here are links to other media sources for health news. Many of these are not original sources, but they are written to be understood by consumers rather than medical professionals:
Note: Some of those sites are also listed elsewhere on this page, but they belong here as well. I do not officially endorse any of them, but they may be useful to individuals seeking news about health matters.
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.
"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.
"The Common Thread
Noel R. Rose, M.D., Ph.D.
Chairman Emeritus, AARDA National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD
What happened about 40 years ago? Well, a number of key discoveries were made--some of them in my own laboratory--which turned that doctrine of self, non-self distinction on its head. We found that there are a number of instances in which the immune response is directed to something in the body of the host itself. It seemed implausible, even contradictory; but, in fact, that was exactly what we found: there are some circumstances where the immune response attacks the body of the host itself. The host may be an animal or it may be a human patient. That is what we call autoimmunity. Autoimmunity is nothing more than the immune response directed to the body of the patient himself or herself. "
To read the entire article, go here:
(EXPERIMENTAL -- Several good search sources appear in all entries, so I am considering standardizing those into a search grid formatted table for ease of navigation. The idea is the grid will include a tag for all the usual resources, and under a particular condition you can just click on the source, and the pertinent search will appear in a new window. This is new, so I may play with it a bit before it settles down. A crossed out link, means that source did not have a page for this diagnosis. I will likely use
Vasculitis diagnosis is not an easy thing sometimes. Even when a very good doctor is looking for a cause, it can take time and effort to narrow down the diagnosis. Sometimes, patients come to us with symptoms, but no definite diagnosis. They are taking the same rheumatic medications as any other vasculitis patient, and so while they are sorting out the diagnosis, they can and do participate in our local chapter for purposes of support. One example is a woman who comes to our meetings is being treated for a condition known as Livedo Reticularis, also known as Livedoid Vasculitis, which is relatively benign compared to other types of vasculitis.
Rheumatoid Arthritis Medicines: A Guide for Adults" - Although vasculitis and Rheumatoid Arthritis are not strictly speaking the same disease, they are both autoimmune disorders and do share SOME similar treatments. Many of the vasculitis medications for immune suppression are adapted from use for RA patients. Therefore, this is an excellent resource for learning more about any medication known as a Disease-Modifying AntiRheumatic Drug (DMARD). (E.g. Methotrexate and Rituximab)