YOU ARE HEARD

Syringomyelia has a stranglehold on many people’s lives. Those diagnosed, and their family members, struggle with the day to day roller coaster of living with this condition. Pain, fatigue, uncertainty, and to make it worse, a medical industry that is failing to take necessary action to better understand and treat syringomyelia. Why is it that the brightest minds in our medical community, have seemed to shy away from taking this condition head on? Why are so many providers telling patients that “it’s all in your head”, and that the syrinx couldn’t be causing your symptoms? At SAAC, we read stories like this on a daily basis. So why isn’t the medical community getting it? We have treatments for many diseases, complex diseases. Yet, only 5,800 studies have been conducted and published in NIH as of this writing (Dec 2025). More than 800,000 studies have taken place and been published in NIH for a disease not even cured yet, breast cancer. How can we expect progress of a condition that is being studied at such a small fraction of a disease not even solved yet?

SAAC sees a clear problem here and is bringing a new form of advocacy to the forefront of the medical community. We see the condition as nothing less than possibly life threatening, but certainly life diminishing. We also see how the medical community has isolated this diagnosis and failed to connect the dots as a whole system. At SAAC, we approach this diagnosis as whole body. Disruption of CSF is a BIG deal, no matter the location, no matter the size, it requires an elaborate, intentional approach. This elaborate and intentional approach needs to be happening in research labs, physicians offices, and at home with lifestyle choices that foster the best opportunity to manage symptoms related to syringomyelia. Unfortunately, with the lack of research, we are limited in how much we know for certain we can do to manage or get rid of syringomyelia. As of this writing, only 2 options really exist. You either sit around, treat yourself as if you need to be bubble wrapped, and hope you don’t get worse, or you get an unreliable shunt surgery, when in many cases, people come out of that said surgery, worse. This is absolutely unacceptable in this day and age of medicine. We see this as a true act of negligence in the professional medical community, and will not stand for it anymore.

SAAC is dedicated to getting those affected by syringmyelia answers and access to better treatment options. As well, we want to ensure that no further psychological damage is done by seeing providers who dismiss this condition as a mental health disorder, in return, just making the quality of life of the person in which they told that to, worse, because they have had their real feelings, pains, aches, worries, dismissed by a provider who isn’t taking the proper steps in order to maximize patient opportunity. We want to redirect these individuals who have experienced this neglect, and get them to the providers who are maximizing all their resources and will hear the individual, taking their words as a primary source of evidence, not dismissing it. In addition, SAAC wants to develop a community of support. A community that listens, understands, and wants to help. Syringomyelia diagnosed individuals perhaps struggle the most with their health because of a lack of clarity in a situation that is consistently being invalidated or just simply has no other options. SAAC will fight tooth and nail to provide new options both in clinics, and at your home, in order to best set you and your family up for success. No more uncertainty. No more drowning. No more voices falling on deaf ears. At SAAC, you can say it loud and proud, “I AM HEARD!”