

Misdiagnosis & Patient Advocates
This past year we have talked to many families with similar stories. Most have seen the same doctors - and share the same stories of frustration. Recently we met a family with a teenage daughter going through testing for POTS with the very first neurologist we saw. We talked briefly about POTS and the symptoms and agreed to talk again after their daughter's tilt-table test. I had been dumbfounded when the doctor told us Meghan's issues were due to anxiety and that she nee

Mast Cell Activation
I am continually learning about new things...and it certainly is an important time for discoveries in auto-immune disorders, the immune system, the nervous system and how they interact. Researchers continue to learn more about these types of conditions while also realizing they have a lot yet to understand. The internet and the ability to find scores of information on so many topics will either drive a person insane or give them hope of what new understandings are taking pla