I “met” Christina only online in one of the many Facebook EDS support groups I found after I became suddenly and severely disabled by it in 2012 myself at 45. She eventually joined the Oregon EDS support group I ran in 2012 as she lived in California and had family in Oregon too. She would PM me many questions and share her own experiences and battles with chronic infections and a poorly gut and the resulting nutritional deficiencies and remedies she found. I got a lot of good information and health tips from her experiences that have indirectly helped many in the support groups I’m in. She eventually moved up to be with her mom in Albany, Oregon in 2016 to try to receive better care and a little more help as she slowly succumbed. Sadly, while they were not terribly far from Portland where I live, I never did get to meet up with her in person before she passed away unexpectedly (for me) from what was likely complications of gastroparesis at just 46 years old. I was shocked to learn of her passing, as I knew her to be such a fighter. She left behind a son who misses her dearly.
I remember her as a super-smart and sweet soul and champion for all with EDS and its myriad complications, diagnosed or not. She had a heart of gold and gave a piece of it to all she came across. I carry her in my heart daily as I fight to raise awareness of this under-diagnosed condition. No one should have to succumb to it so early, especially after fighting so terribly hard.
Thank you for being our champion Christina. Rest in peace, you brave soul. We will carry the flame of awareness for you now.
—Jan Groh
