Even Surrounded by Great Doctors, No One Knew I Had Periventricular Heterotopia or EDS

May 30, 2016

by Jen Christ

While working at a major trauma hospital here in Sacramento, doing biopsies in colons, lungs and stomachs at the age of 22, I began having my only medical problems in the form of “Complex Partial Seiezures.” Mine in particular are rare as I have the ability to walk, talk, run, and even yell during them.

My coworkers, all doctors, thought I was just having panic attacks. They thought this because my pattern was that I would have the seizure, wake from it, complete the biopsy, but then not remember what just happened.

It took a year for them to finally get the diagnosis correct, but the neurologist still didn’t know what was causing them. Although, he did believe there was abnormal gray matter stuck in my right temporal lobe, which was mis-firing and damaging my hippocampus They then decided to remove my Right Temporal Lobe and half of my Hippocampus due to uncontrollable Seiezures.

If I thought my troubles would be over after that surgery, I was wrong. The seizures themselves came to a stop, but I would have one surgery after the next for different things in the next few years. Both feet, twice–my hip, colon, shoulder, and now I have three more surgeries scheduled.

I am now 37 years old and finally four years seiezure free (with meds)! But after breaking out in a ridiculous amount of bruises (sometimes 20- 30 at a time they finally sent me to a geneticist)- I was scared of the results, yet happy to have an answer!  The seiezures (epilepsy) was due to a rare disease called “Periventricular Heterotopia” and all the bruising and joint pain and snapping of tendons was due to a condition called “Ehlers Danlos Syndrome (hypermobility type III)”- All the years of made to believe I was a hypochondriac…I finally felt validated !

The best advice I would give to another person who’s going through similar pain or unknown issues is would be to be your own advocate!! Don’t give up!!!

There’s no cure for my conditions, just treatment for any of the connective tissue (such as surgeries).  If I didn’t push like I did then my two sisters … Including my identical twin…wouldn’t have their answers either-( they both found out they have “Ehlers Danlos” too. )
My identical twin and I have gone through trials before being diagnosed … ( the trial was through Stanford University…it was to study “Genetics vs. Environment” …cause she’s been all over the world and I’ve lived in the same city my whole life. ) I encourage everyone with a condition to take part of trials. You never know if it will help you or many others in the future.

Did you have a similar diagnosis? Tell us your story below.

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