New Facebook Group for Crohn's Research

[irishgal]

Hi All - wanted to let you know of a new Facebook group that The Crohn's Infection site started as a way for Crohn's and other IBD patients to connect around the topic of treating Crohn's as a mycobacterial infection. I've loved this forum and have learned tons about my disease and made many friends, so I wanted to share this group as a social medial platform option for any that may be interested. A little less informal and a way to connect and get the latest updates in real time. Hope you are all well!!

https://www.facebook.com/groups/1558961697758226/?ref=ts&fref=ts

 

[The Real MC]

Might want to be careful with FB groups with your private health information becoming public.

 

[irishgal]

Yes, I fully agree Real MC. The design of the FB group is to allow patients to comment on the research posted on TheCrohnsInfection.org, which is a site that provides information on Crohn's being mycobacterial driven. It's info the docs don't discuss with their patients, but very valid as a treatment alternative, which is why the need to spread the word.

If I hadn't done my own research and gotten referred to these out of the box research docs, I would be quite sick. As it is, it's like I don't have Crohn's! My belief is that others may be interested in learning like I did. Not trying to push this treatment on anyone, but just make the info available for consideration. It's still in large scale trials.

The FB group is set to private, so the public can't see the posts or comments. Still, I know FB profiles members heavily, so I would agree that people should be very cautious when sharing medical info online. Hoping the discussion will center around the research as it evolves and focus less on personal medical info.

Thanks for bringing this up. A good idea for everyone to remember.