This morning I read a three-day old story on NPR, entitled “Patients Turn To Online Community For Help Healing“.
In that segment, three websites were plugged: Microsoft’s My Health Info, Google Health, and Patients Like Me.
I decided to check these sites out. I was thwarted immediately upon reaching Microsoft’s My Health Info page, because it wanted me to install Microsoft software called Silverlight (because they hate Adobe Flash for some reason). Nope, sorry, I won’t do it right now, thanks anyway.
Next, I checked out Google Health, and signed up. I shared the site with my female cousins who I suspect also have endometriosis. The site seemed alright at first…until I wanted to upload my medical files. Apparently I can’t just upload scanned documents - I have to go through some third party website, register there, and upload my medical documents there…or something. Another thing - while I can send email notifications to share my info with people, there doesn’t appear to be a forum or community to discuss my condition.
So I was not impressed with Google Health.
Lastly, I checked out Patients Like Me, and was thwarted at the sign-up page, because they do not have Endometriosis listed as a condition I can sign up to talk about!
Their website registration page has a sentence which reads, “Our current communities are for people with ALS/Motor Neuron Disease, Anxiety, Bipolar, Chronic Fatigue Syndrome, Depression, Epilepsy, Fibromyalgia, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson’s disease, and PTSD (Post-Traumatic Stress Disorder).”
I noticed the “Don’t see your condition? Request it here” link, and clicked through to fill out the request form to add endometriosis to their website.
Then I signed up on their site, anyway, choosing “Mood conditions (depression, anxiety, bipolar, OCD, PTSD, etc)” from the drop-down menu.
Endometriosis very often leaves me severely depressed, so it’s relevant.
So far, the Patients Like Me site seems like it’s doable. There’s a quick glance in chart format as to my mood and health, and there are forums for people to talk about their issues. You can search people with your same condition and find them in your geographical part of the world to really connect with.
Hopefully they’ll get that Endometriosis community going soon, because I really like the way they tie in symptom tracking and forum communities in one website!
In the meantime, for emotional support, check out the many sites I have listed on the right sidebar of this website, under “Online Support and Advice”.
For symptom tracking, check out the three sites listed in the left sidebar of this website, under “Symptom Tracking”. They are CureTogether.com, ReliefInSite.com and MyMonthlyCycles.com. I personally find ReliefInSite and MyMonthlyCycles the most helpful in tracking and more importantly sharing info about how endometriosis affects me, but CureTogether’s awesomeness comes in collating information from people who share their symptoms, and churning out reports and also a book to educate others! Register with one or all three if you wish!
