I am a 31 year old military wife and mom of two young and active girls. In 2014, I was diagnosed with Ehlers-Danlos Syndrome (EDS). EDS is a genetic connective tissue disorder; basically, the glue that holds my body together doesn’t work. In 2015, I was also diagnosed with idiopathic intracranial hypertension (IIH) and came dangerously close to losing my vision. Five months after being diagnosed with IIH, I underwent surgery to have a VP shunt placed in my brain. The VP shunt saved my vision and my life. In 2018, I started having neurological issues. I started losing my memory and my ability to retain new information. After a lot of tests and imaging, it was determined that I also had a chiari malformation. In December 2018, I had to have emergency brain surgery after my VP shunt malfunctioned. In January 2019, my VP shunt malfunctioned again, twice. But thankfully, both times, the doctors were able to get it to start working again on its own, without more brain surgery.
My local medical team has done all they can to get to the root of my neurological issues, but they can’t seem to pinpoint the root cause. They believe it has something to do with EDS, but they don’t know what. I have been advised that there is nothing more they can do for me but to monitor and manage my symptoms. But my neurological and cognitive function are continuing to decline and my pain and nausea are continuing to increase. It has been advised that I seek treatment by an EDS specialist who will be more familiar with EDS and it’s comorbidities.
My neurologist “fired” me as his patient and told me he would not treat me anymore. As a result of this, I reached out to the Mayo Clinic. The Mayo Clinic has accepted me as a patient and I have an appointment scheduled in June.
My insurance should cover most of the medical expenses, but doesn’t cover the cost of travel expenses or lodging.
If you are able, please consider donating to help with our travel and lodging expenses for our trips to the Mayo Clinic. We are hopeful that the specialists at the Mayo Clinic are able to help me regain my life. I hope for the day when I can ride bikes with my kids again.