When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?
If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.
To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”
PATIENT 1 (MS)
SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”
FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”
LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”
PATIENT 2 (MS, asthma)
SHARE: “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”
FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”
LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”
PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)
SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”
FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)
LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”
Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?
2 thoughts on “One for All: Ways You Can Share, Find and Learn at PatientsLikeMe”
so when are you going to open the doors again?
It will be another few weeks before we are open to the public. We want the site to be ready. If you know a member, however, you can join via invite. If you’d like us to notify you when the doors open again, just leave us your email address here.
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