In this age of Internet information, it's often hard to know who to trust. When it comes to finding medical information on the Internet, you want to be sure what you are reading is accurate, up-to-date and relevant to your situation. Sure, there are the big websites like WebMD and Healthline that can get you started when you want to learn more about specific medical topics, but when you are living with chronic illnesses you often need more in-depth information that these sites provide.
If you are like me, your desire for more knowledge leads to endless Google searches that are sometimes fruitful and sometimes a bust.
After a while, you get to know which websites contain the information that you are seeking, and more importantly, the ones that you can really trust. My test is printing out information and bringing it to a doctor's appointment: if the information leads to a productive conversation, the website is bookmarked as a favorite. Of course, don't try this with just any physician---some don't believe you can access ANY medical information on the Internet.
What, you may ask, is heroic about a health care website?
Good question! and my answer is this: the websites I am featuring are run by people who are truly committed to the health and well-being of the people they choose to serve. These web health entrepreneurs strive to educate, provide resources and support, create community and promote advocacy efforts. Their efforts often take them to medical conferences, through the pages of medical journals, into interviews with medical experts and even in front of health care policy makers. Once they have the up-to-date and relevant information, they translate it from medical jargon into simple, plain, everyday English and publish it on their websites. Often, these health care bloggers, educators and advocates live with the illness(es) they write about, so they have a personal stake in getting the information and getting it right.
CFIDS & Fibromyalgia Self Help is a non-profit organization started by Bruce Campbell, PhD. in 1998. They provide online self-help groups to teaching people with CFIDS and FM how to manage their illnesses. Bruce is a recovered CFIDS patient.
ChronicBabe.com is a website creating a community for "sick chicks", young women who also happen to be living with chronic illnesses. Founder and Editrix Jenni Prokopy came up with the idea in 2005 after living with fibbromyalgia and other chronic illnesses for 8 years. The upbeat spirit and the information keep me coming back and make this one of my favorite websites.
The Dysautonomia Information Network (DINET.org) is a non-profit organization run entirely by volunteers with the mission to promote dysautonomia education, support and networking. Networking takes the form of the Meet Others program where you simply fill out a form and a list of local members is emailed to you. Pretty ingenious!
Fibromyalgia Network is a patient advocacy organization founded in 1988 by Kristin Thorson. For a modest fee of $28 per year, members receive a unique quarterly journal: absent from its pages are the influence of advertisements for medications and products for fibromyalgia. This organization prides itself in being independent, objective and scientifically-focused in its articles and reports on what works and doesn't work for people with fibromyalgia. Kristin Thorson is a person living with fibromyalgia.
HCV Advocate is the website of the Hepatitis C Support Project and founder Alan Franciscus. Created in 1997 in response to the lack of information available about Hep C, the website provides in-depth education about Hep C, Hep B and HIV/HCV co-infection. One of its more interesting features for me is the Hepatitis C Treatments in Current Clinical Development were I track the slow crawl of antiviral medications for HCV through the clinical trial process. I believe this website knows more about HCV than my hepatologists ... scary! In addition, Alan is a person living with Hepatitis C.
Thanks to my heroes for keeping me informed and feeling like part of a bigger, stronger, supportive community!