Support Groups

When I first joined the Facebook Support Groups, I didn't know what to expect. I had no idea they would help navigate my health more than any medical practitioner to finally figure out what was causing my debilitating pain and get surgery. I also didn't realize that I'd meet forever friends without leaving my house or have to see them in person. 

 

Of course there's always a positive and negative to everything. For me personally it was beneficial when asking a question for direction and feedback about doctors and next steps when I wouldn't know where to turn. I would also be blown away how my experience would become valuable to others and they would soon reach out to me so I could give back. I think you do just have to realize that some people become very passionate about one certain surgery or a certain doctor not understanding everyone doesn't always have the same options, finances, or location. 

I also think a problem is that a lot of doctors don't understand that us patients can be interested in actual research journals/studies and not just "googling" to scare ourselves with worst case scenario. It's been incredibly rewarding to find doctors who see the value and actually are impressed by the knowledge we have about our condition, body, and treatment options and get to have very interesting conversations that might benefit their other patients. The goal of the support groups is to give hope and to spread awareness so everyone can get an early diagnosis and have the same access to treatment. 

 

 MALS-

• MALS PALS
• MALS Awareness Community
  

SMAS -

• SMAS Warriors Support Group (Superior Mesenteric Artery Syndrome)
• Superior Mesenteric Artery (SMA) Syndrome Awareness & Support
• #TeamTinyUnicorn
• Texans with SMA Syndrome - United We Fight
  

NCS-

• Renal Nutcracker Syndrome Support Group
• Nutcracker Syndrome/Pelvic Congestion Support Group
• LPHS/NCS-Support & Science 

MTS-

• May-Thurner Syndrome Resource Group

PCS- 

• Pelvic Congestion Syndrome (and more) Support
• pelvic congestion syndrome/ gyn issues ladies unite
  

 TOS-

• Thoracic Outlet Syndrome Support Community
  

 Multiple Vascular Compressions-

• Vascular Compression Syndromes Support Group
• Multiple Compression Syndrome Support Group
  

EDS-

• Ehlers Danlos Syndrome Support Group (freely discuss your issues/concerns)
• Ehlers Danlos Syndrome
• EDS - Zebras need Zebras

Texas EDS -

• Ehlers Danlos Syndrome - Dallas/Ft. Worth Support Group Private
• https://www.facebook.com/groups/EDSTexas/
• EDS Texas Social & Support
  

Endometriosis-

• Nancy's Nook Endometriosis Education

Mother with EDS or Chronic Illness-

• Moms With EDS
  
• Mother's with Chronic and Rare Diseases
  

 EDS Related Conditions-

• POTS, EDS, MCAS, and Related Conditions
  

POTS-

• POTS (Postural Orthostatic Tachycardia Syndrome) Support Group
• POTS
  

MCAS-

• Mast Cell Activation Syndrome Community

PICC Line-

• PICC Line Club 2.0

 

Are there any that you've been in that you would love to share because they've helped you? You have to keep in mind before these groups so many had to navigate their health in the dark, but they didn't want others to suffer so they created them 💜 If you haven't thanked an administrator of the group or someone you know who advocates for awareness, please do. They don't hear it enough and sacrifice time and energy that I don't think many realize. If you also find a good doctor who listens and encourages you to share your knowledge, make sure to thank them as well.