“Knowledge is like money: to be of value it must circulate, and in circulating it can increase in quantity and, hopefully, in value.”
– Louis L’Amour

It’s amazing how doctors will tell us to stay away from patient-based groups yet have no answer when you ask them why so many “decompressed patients” (who are being told that they are cured), are in these groups seeking answers to pain/symptoms that the decompression failed to fix.

• We’re tired of being told that our MRIs are fine when they’re not (sometimes even when radiology reports - that they never expected us to ask to see for ourselves - say differently).

• We’re tired of talking about the size and shape of our cerebellar tonsils, by doctors that don’t understand what it feels like to have blocked cerebrospinal fluid.

• We’re tired of doctors being willing to remove the only bone trying to hold our brains inside of our skulls but aren’t willing to look into other pathologies that can cause the tonsils to drop below the foramen magnum (usually not even telling us that there are other pathologies for the prolapse).

• And we're tired of trusting our doctors to decompress us, only to have them tell us that we're cured and deny our continued symptoms afterward.

• As a community, we're tired of watching patients die fighting for treatment options.


And we’re not going anywhere until we get them! We have no choice. If we fail to change this fight, our children will face the same life-threatening obstacles that we have! And that pursuit must begin with us making ourselves knowledgeable on ALL of our conditions!
Have you fought the fight and have a passion to help other EDS/Chiari/Comorbid patients learn to fight theirs? If so, joining our Patient Advocacy Resources Team might be the perfect place to help make a difference!
We are looking to organize a team committed to Self-Advocacy and Parent Advocacy Resources.
For more information, our listing!