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 8th 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.
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| 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.
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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.
