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Online Meeting

FACEBOOK GROUPS

Online networking with others who have the same or similar illnesses helps provide info.

When I found out I had Pelvic Congestion Syndrome, I went online and joined a support group.  From here, another member suggested I had Nutcracker Syndrome (NCS) and suggested a doctor in my state.  This was the first time anyone had ever mentioned NCS.

 

USE THESE GROUPS TO:

  • find providers

  • figure out which tests to ask your primary care doctor to order

  • use the search bar to search symptoms similar to yours

  • ask questions publicly to the group, or privately through chat

  • connect with others who understand where you are, helping you feel less alone

FACEBOOK TIPS

  • Choose groups that have the most members, this means a higher possibility of someone with the same symptoms

 

  • Fill out the questions to join the group completely, not doing this may delay getting in the group

 

  • It's okay to join multiple groups to see which one you like best, plus all groups have different site files that may be helpful

  • Use the site's files and search bar, these can be invaluable (the search bar is at the top and there is usually a files tab at the top, if not, look under the MORE tab).  Make sure you are searching in the group and not Facebook in general

  • Look for groups local to your state or region, these can be especially helpful for locating providers and treatment

  • ​​To begin, search general terms and abbreviations.  MALS PALS is a group, so the full name may not work.  Know that groups sometimes have names you might not be searching for (Renal Nutcracker Syndrome Support Group vs Nutcracker Syndrome/Pelvic Congestion Support Group) both groups exist.  There are also groups for single issues and groups for multiple issues, be aware of this, sometimes it's nice to connect with someone who has multiple issues

 

  • Join groups of disorders you may have but cannot find a provider for, don't know what tests to order, can't get a diagnosis for, or groups for issues you're not sure if your symptoms match

  • As always, be kind, respectful, and follow group rules

Image by NeONBRAND

SAFETY AND MISINFORMATION

This is STILL Facebook... 

  • Remember that the medical information you find or the advice you get is not necessarily factual or correct. You still need the professional help of a doctor and tests to confirm any diagnosis. ​

  • Also, when you share with any doctor that you're getting your information from a Facebook Group, they may not receive this well, similar to how some providers do not like patients doing their own research online.  Try to be discreet and professional about the information you share from Facebook with providers.

  • Although these forums are supposed to remain private, it is important to remember what you share is still public in some form.  ​

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