Faces of Courage. Emily

My name is Emily. I am 24 years old. I live in North Carolina, and I’m the oldest of three girls. I enjoy doing crafts and being artistic. I love to travel and sight see, something I wish my body would allow me to do more of. I hope to live in Florida someday, where my body seems to feel the best. I have four small dogs who are my world and won’t leave my side when I don’t feel well. They are my constant companions.

I was a “normal” child, but complained a lot of random aches and pains. As they were inconsistent nothing ever became of them. I continued to take dance lessons, play on the school soccer and volleyball teams and would play outside with the neighborhood kids until dark. So why was anyone to think anything was abnormal? I was a sophomore in high school before anything became of my daily symptoms. I was diagnosed with chronic acute Mono two weeks before Christmas break and was kept home until after break. On the first day back for second semester I got lost at school. Yes, lost, as in I didn’t know where I was, why I was there, or who was around me. I was found wandering around the halls after all the tardy bells had rung. I got lost in a place I had attended an entire year and a half already. It made no sense. After failing my primary care physicians neurological exam, I was sent for an MRI. As much as we all tried to think positively while waiting, it was hard not to immediately think the worst, as my sister had Leukemia at the age of five. The MRI tech asked us to wait and then to speak to the doctor on the phone. It’s never a good sign when asked to wait and the doctor wants to talk to you himself. Fortunately, it was not Leukemia, but he did say four words that changed my life forever... “You have Chiari Malformation.” After searching and visiting many neurologists and neurosurgeons all over North Carolina and the Southeast, we finally found a neurosurgeon in Charlotte who agreed that the size of my herniation did not indicate the severity of my symptoms. He agreed that surgery would be beneficial, so he said he would perform Chiari decompression surgery. About six months later after surgery, my Chiari symptoms were in full force again, so he ordered a repeat MRI. It turns out a bunch of scar tissue built up, but he did not know why. He then decided to do a surgery called duraplasty on me, but again my symptoms returned a short time later, and he didn’t have an explanation as to why. So the search for another opinion began. We searched for more opinions, and it was clear that most thought I had the surgery and I was “cured.” There is NO cure for Chiari and the size of the herniation does not matter. After attending a Chiari walk in Georgia, the closest one to us, we found out about a neurosurgeon in Maryland who could possibly help me. We couldn’t imagine traveling out of state for medical care, but with my rapid decline, we decide to make an appointment to see him. He believed that there were more issues as to why I was hurting, and as to why my symptoms kept returning. We spent two hours going over my symptoms, scans, and medical history. He diagnosed me with Basilar Invagination and Craniocervical Instability. At that time in 2011 my clivo-axial angel was 99 degrees, one of the very worst he had seen at that time. It is supposed to be between 150 and 165 degrees. He gave me an aspen neck brace and told me not to remove it until after he performed occiput to C2 fusion. I couldn’t believe we finally found a compassionate neurosurgeon that believed I could still be hurting and having daily issues, even after having Chiari decompression surgery and duraplasty surgery. It was a huge relief.

During this initial consult he referred me to a geneticist in Baltimore, Maryland to be evaluated for Ehlers Danlos Syndrome (EDS). The geneticist did diagnose me with EDS type 3 hyper-mobility. After seeing many other specialists I was diagnosed with many other co-morbidities: Intracranial Hypertension, Mast Cell Activation Disorder, Gastroparesis, POTS, Tethered Cord Syndrome, Thoracic Outlet Syndrome, Interstitial Cystitis, Neurogenic Bladder, Dystonias, Left Temporal Lobe Seizures, Adrenal Insufficiency, Cerebral Stenosis, Spinal Instability and Degenerative Disc Disease. It all started to make sense, and the puzzle pieces were coming together, so to speak. EDS was reeking havoc on every part of my body and even though I was born with this genetic condition, it took fifteen years to figure out what was wrong. I had my first surgery in Maryland in December of 2011 and then started to tackle the rest of my body systems one by one that were having issues. During this time I clung to the verse, “When I am afraid I will trust in you.” Psalm 56:3. I am still under the care of all of the physicians mentioned above as well as another one in Pennsylvania. I am fortunate to have a primary care physician at home who works diligently to help me. Having so many surgeries, procedures and medical testing at such a young age, made my life very different from my peers which made it hard to fit in. Instead of football games, prom, dances, homecoming, and high school, I was bedridden in between appointments and surgeries.

​Monica and I just recently met in person, but I feel like I’ve known her forever as we send handwritten notes of encouragement and hope to each other. Monica’s #pentopaper always comes at the perfect time. My friends have become those who are on the same journey as I am. Most of my really close friends live of state and travel to see the same doctors as I do. We stay at the same places and see each other in waiting rooms. We get each other. We understand exactly the pain the other person is going through. It has helped to have people in my life who fully understand what it feels like to live this life physically and mentally. I have made life long friends from this medical journey and I’m forever grateful for them. We sometimes go days to weeks without talking or texting, but we know we are always there for one another, and when we do catch back up, it’s like no time has passed at all. Out of all the hard and challenging things this life has handed me, it has also given me some pretty wonderful friendships and opportunities such as Option EDS-The Retreat. I am looking forward to spending a few days away from reality with those who truly understand what living life with EDS means. It will be so nice to sit with the sun shining on my pale skin and exhausted body and just relax with little worries or responsibilities. Thank you, Monica and everyone who has helped make this retreat possible. I am excited to be a part of the first Option EDS-The Retreat. “The Pain that you’ve been feeling can’t compare to the joy that’s coming.” -Romans 8:18