When you have a Primary Immunodeficiency Disease (PID), your body's energy stores become more precious than any metal our pale blue dot could ever produce for any empire. How you choose to spend that energy takes on new meaning. Perhaps this is one of the reasons why I am always so enamored of the art … Continue reading

Take a look at this wonderful poem that recently took the Pongo Poetry Prize for teen poets. Written about her experiences dealing with Ehlers-Danlos Syndrome type 3, the 17 year old poet studies Early Childhood Education at the University of Cincinnati. DIDN’T ASK by a young woman, age 17 Everyone wants to be different, But … Continue reading

Seeing this rural American school trying to protect its EDS students made me feel hopeful about the spread of accurate and reliable information about this rare disease. I hope to see many more posts like this one in the future!