Backstory

     Hello! My name is Julie. I am, in many ways, your typical  21 year-old college student. I am a junior at George Mason University. I love traveling, languages (learning my 8^th now), movies, photography, nature, fixing things, and art. I live in the dorm on campus during the week and on the weekends I stay with my mom and work. During the school year I work part time as a support staff person for kids with special needs in camps and classes. My hope is to become an Occupational Therapist. I love it because it combines the problem solving and MacGyver-esque fixing with helping people and medicine. I also have been volunteering at a local free clinic doing medical interpretation as well as some administrative tasks for almost 8 years now.

I have an older brother who is now 23 and was my partner in crime throughout childhood. My mom and I are pretty close, we both like similar music, playing card and board games (when I let her win ;) ), and watching movies. As kids, my parents took us on several international trips, but as we got older the traveling radius got smaller and smaller. That is until I caught the travel bug again in 2011. I convinced my mom to go back to Ghana with me. It was the first of many a life changing trips. Now we are all probably familiar with the new fad of “voluntourism”, and going to developing countries to “make a difference”. Well I was young and naïve and I thought I could change the world in the month I was there. Needless to say, I learned an incredibly important lesson about expectations and going with the flow. I think this has helped me in dealing with my illnesses. 

The next year I received a State Department Scholarship to study Arabic is Muscat, Oman for the summer. First off, I learned that having a severe food allergy to onions in a country whose cuisine is a combo of Middle Eastern and Indian is complicated. The first day of the program in-country I met with the Indian cook for the program, told him about all my allergies and how important it was that I don’t consume anything with ingredients I’m allergic to. The cook responds flabbergasted, “but ma’am, with no onions…no flavor”.  Needless to say having an anaphylactic reaction in the middle of the desert is nerve racking. After graduating high school in 2013, I made my way to Peru to volunteer in a clinic for one last hurrah before college. 

At the top of Mt. Machu Picchu 

 So that’s the typical young adult part… but who wants to be typical anymore?

 I spent my freshman year studying Nursing at the University of Alabama Birmingham (UAB). Due to my work at the clinic and my good grades I was pre-accepted into the School of Nursing, just as my grandma had done there many years before me. I loved college, I loved my nursing classes, I loved my independence, and I loved the possibilities of what my life could be. Two weeks into school I woke up at 3:00 am in the ER. I didn’t remember getting there, what I was doing before, or going to sleep. I frantically pressed the call button until the nurse came in and explained to me that I had a seizure and have epilepsy. She paged the doctor and he came in, explained that they were going to start me on anti-seizure medication and have me follow up with a neurologist. Epilepsy. The nurse came back with my discharge papers. I laid there frozen for a few minutes till things caught up. I panicked. I remember calling my mom, my aunt, and my friends desperate for someone to pick up the phone in the middle of the night and tell me it was going to be okay. Finally, my uncle, a doctor in Oregon, picked up. He calmed me down and told me to hand the phone to my nurse or doctor. He talked with them and helped me make a plan. I had no idea that this was just the beginning. It was just like that moment in Ghana where I realized things were changing and there was only so much I could do.

            The rest of my freshman year was a battery of tests, hospitalizations, therapy sessions, and doctors visits. They ruled out epilepsy eventually with continuous EEG monitoring and passed me off to a psychiatrist who passed me back to the neurologist who eventually passed me back to the psychiatrist. You get the picture. By the end of the year I felt like I was 89 years old, not 19. After my freshman year ended I had to make one of the toughest choices of the year: drop-out of UAB, leave my friends and nursing school slot and move back to Virginia with my mom for treatment, or to continue trying to balance school (somehow managed a 4.0 my freshman year despite my health continuing to decline) and treatments with no support system within 500 miles. I chose moving back. I enrolled for online classes at my local community college and started making calls to specialists and doing my research. At that point, I was still having seizure like episodes, syncope, digestive issues, more frequent joint dislocations, severe migraines, breathing problems and severe allergies. Nobody could figure me out. 

I had one friend in the area, very little interaction with the outside world, and lots and lots of interaction with the medical world who gave me diagnoses of things like Munchausens, Conversion Disorder, “Just Anxiety”, Attention Seeking, “Abdominal Pain”, etc. I grew more and more frustrated and sick. Finally, a friend from high school mentioned Ehlers-Danlos Syndrome (EDS) and Dysautonmia/POTS (Postural Orthostatic Tachycardia Syndrome). She had been diagnosed in middle school. Having no idea what she was talking about I started googling the conditions. Things started to make sense. I was a pretty sporty kid, but spent most of the time on the bench due to injuries. A normal scrape for most people took months to heal and always scarred for me. Sitting still caused pain. Standing up made my head spin and I frequently passed out. Eating made my stomach hurt. Even after 2 years of braces and a permanent retainer on my teeth they still shifted right back to where they wanted to be. A shoulder injury in middle school put me in PT for two years with little improvement. Wait…normal people don’t have joints that pop in and out easily? I printed out the information on EDS and POTS and made an appointment with my primary care. I finally felt like I knew what was going on. I wasn’t making this up. This is real. My primary care breezed through the information sheets, looked up at me and told me, “you don’t have EDS, we would have seen it by now”. Seen it… an invisible illness… she didn’t see it. It felt like a dagger in my chest, but I didn’t give up. I made an appointment with the cardiologist my friend sees who is one of those world-renowned types who appears on talk shows and has people who traverse national boundaries to see him.  

Three months later after even more tests, he looks at me and says, “you definitely have POTS and EDS and a complicated case of it. I also think you have Mast Cell Activation Disorder and Cranio-cervical Instability (CCI). EDS and POTS have no cure but we will do our best to help you manage your symptoms.” I felt relieved and somewhat happy. Someone finally believed me. Ehlers- Danlos Syndrome is a group of connective tissue disorders in which the body produces weak and faulty collagen which is the “glue” that holds your body together. All of my joints dislocate very easily. I am extremely hypermobile. I bleed, bruise, and scar very easily. Additionally, my veins and organs are prone to rupture. I am in constant, severe pain. Since collagen is everywhere in your body, it effects so all body systems. POTS, MCAD, CCI, Gastroparesis, Arnold-Chiari Malformation, Migraines, Depression, and Anxiety (all of which I have) are just a few of common comorbid conditions that piggyback off EDS. POTS is a condition that affects my autonomic nervous system which controls heart rate and blood pressure. Normally, when a person stands, gravity pulls blood to the lower extremities. The nervous system senses this and sends a message to the blood vessels to constrict, sending more blood back to the heart and head. With POTS, this message to constrict does not get sent. Therefore, instead of the heart rate increasing by a normal 10 to 15 bpm upon standing, it can increase by more than 30 and can even double. By affecting circulation, it also affects cerebral blood flow. Symptoms include orthostatic intolerance (dizziness), chest pain, headaches, GI cramps, inability to focus and concentrate for long periods of time, inability to read due to blurred vision, difficulty with recall, extreme fatigue, nausea, gastroparesis (paralyzed stomach), tremulousness, insomnia, loss of consciousness due to loud noises/ flashing lights and much more. It can also present with seizure like episodes from extreme adrenaline rushes and hypoxia. At last, the real answer behind my non-epileptic seizures. MCAD causes hyperactive mast cells which release histamine bursts causing reactions such as hives, flushing, difficulty breathing, and anaphylaxis. I can react to just about anything (even heat and cold), and what I react to can change. I was newly diagnosed with Long QT Syndrome which can cause heart arrhythmias, syncope, and seizures. I have an implanted cardiac monitor that continuously monitors my heart for 3 years.

Fall of 2015, I started school at GMU and have enjoyed it. It allows me to have a part-time college experience close to home, and close to my medical team. I use a manual wheelchair with a portable power assist wheel to get around. I work 3-4 hours each weekend and in my free time I go to doctor’s appointments, color (when my fingers don’t dislocate too much), watch movies, go for rolls if the weather is nice, and hang out with my friends. On a good day, I can tackle the world. On bad days I need help with mundane tasks and can’t get out of bed. Did I mention my conditions fluctuate? Living with several rare diseases is like having Latin be your first and primary language. The language you operate in, think in, dream in. Now you know English too, but at times English seems so foreign. Naturally, those who understand you best as you would be those who also have Latin as their first language. They understand your struggles in trying to communicate your experiences to others, they understand that you're basically operating on a dead language. If you want to talk to the pope, you're set. Rare diseases and chronic illness can be isolating and overwhelming. They influence my life and can control it, but I refuse to let them define it. After all, I am a professional patient.