Recently one of my blog visitors forwarded me some information on a series done by the New York Times on Lupus patients (thanks Cyndy!). This particular series allows you, the visitor, to hear Lupus patients discuss the disease in their own words. The patients featured come from every walk of life and lend their voices to share information on Lupus, from living with it to treatment issues.
I encourage everyone to take time and visit this series on the web. It is encouraging and at times, heart rending.
Visit it here: Patient Voices: Lupus
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Hi!
I wanted to pass along a new Lupus resource.
It is through a website http://www.lupus.physiciansforpatients.com
It is a community of lupus folks that interact online to give one another support.
There is a dedicated physician on the site to answer questions for the patients.
We originated as a group of doctors dedicated to helping people online in a way to help with high health care costs. The idea is to give a free resource to people that need alternative opinions and information. There are a lot of people that have limited access to health care (can’t find a specialist in their area, long wait times, etc.). This way it is easier for a smaller number of physicians to help a larger number of people.
Dr. Shanahan is the doctor. He is board certified in Rheumatology and trained at Duke University
In addition, we will be incorporating ‘health trackers’ soon! This tool can be used by the patients to track their symptoms and to see what may be contributing to them.
Physicians for Patients will also be looking for associations (trends in complex data sets of the cumulative data collected in this large community of patients. This is done in an automated anonymous manner). This is the exciting part! Our hope is to identify correlations between symptoms, daily activities, medications, and the environment. This will help us to better understand Lupus and hopefully to guide us to new potential treatments.
I am also hoping that you like the site and help us to spread the word about what we are trying to do (any group messages that can be sent/ links/ blogs are much appreciated) In order for us to make some new head way into better understanding lupus through identifying new statistical correlations we need quite a large people to participate.
Best regards,
Art
Art Kaminski MD
President, Physicians for Patients
Hi Art,
Thanks so much for the link for lupus patients. I’m one myself, and I’m happy to share this information with my readers. You can send me any other info to my email address- gerberink@earthlink.net.
Thanks again!
Charlotte Gerber
http://www.lupus4you.com