I am Kate, and I am 28 years old. Growing up I had a pretty typical childhood; I enjoyed exploring outside with my friends, I adored soccer and softball. Then growing up around horses, I began jumping at the age of 8. I was healthy most of my childhood, with minor colds here and there. In November 1999, I became very ill. After missing a week of school, my doctors diagnosed with a sinus infection placing me on an antibiotic. Within days, I was being rushed to Children’s Mercy Hospital in Kansas City due to high fever, immobility and disorientation. Shortly after arriving, I was given my first Lumbar Puncture, which proved that I had Meningococcal Encephalitis, which is swelling of the brain and meninges around my spinal cord.  In order to maintain the swelling in my brain, and to calm all brain activity down, doctors had to put me into a medically induced coma. They would place a rod into the front right quarter of my skull where they would monitor all brain activity. I would remain in a coma, with doctors uncertain to my outcome or survival rate.

Due to the medication, which I was placed on the week before my hospitalization, my medical team at Children’s Mercy were unsure if my case was bacterial or viral, therefore, they had to treat me for both. Sure enough, after 11 days in a coma, I woke up somewhat alert. After months of rehab; learning to walk, write and talk again, I was finally gaining my strength back. Teachers worked directly with me, tutoring me in the evenings, this way I could stay on top of my studies without having to be held back. Within a few short months, I was finally able to return to my friends and my 5^th grade class. But, that wasn’t the end of my journey. Afterwards, we found that I had developed a learning disability where it took me longer to process information. Peers could easily grasp concepts, where it would take me repetition and constant memorization to grasp the same information. Six months after being released from my initial hospitalization, I was rushed back to the hospital for what they thought was a second round of Meningitis. Shortly after arriving, my Lumbar Puncture came back positive. Fortunately, this time we caught it soon enough that it did not have the residual effects as before.

Eventually, life went on. I was a typically developing teenager with close peer relationships and a very close tie with my family. Although I forgot how to ride horses and play sports, I felt happy and somewhat normal! Spontaneous symptoms began to arise, making me feel ill; severe stomach aches, debilitating migraines, joint pain. After being referred to several specialists, I had a stream of ongoing tests. My blood work was always abnormal, but they could never pinpoint what the issues were because the blood work was never consistent. I had Thrombocytopenia, which meant that I had chronically low platelets. I also had low white blood cells, that would never stay consistent. My ANA was negative, but always gravitating towards the slightly positive side. Then in 2004, I had Uveitis, which we knew nothing about other than it was a key marker for an underlying Autoimmune condition. My doctors had no idea where to turn. They considered all the text book autoimmune conditions, but I never seemed to fit anywhere. It came to the point where I really felt like something was wrong with me, feeling like it was all in my head. I was rare.

At the age of 18, I graduated high school. I was so proud! I absolutely loved school, but with my slight delay, it was always a struggle for me to ever feel like I could accomplish anything. I made sure to study hard because college was in my future and I would do whatever I could to make it there. Sure enough, I graduated with the A+ Scholarship, and had two years fully paid for through a community college in Saint Louis, Missouri. After completing 2 years, I was then accepted into Missouri State University, where I chose a degree in Child and Family Development, with emphasis in Child Life. I enjoyed school! I adored my degree and imagined all the places that it could take me. Living a somewhat typical college life; I had many friends, I quickly became a part of campus groups and oddly enough, LOVED writing for school and pleasure. I felt on top of the world for the first time in my life!

Fall 2011. I was 22 years old, I became very ill. Going to the campus medical center, the campus doctors strongly encouraged me to go to Cox Medical Center for what they feared was Meningitis, again. I was terrified. Here I was, 22 years old and 3 hours from my home town, being rushed to the emergency room. My childhood memories came rushing back to me! My best friend, Sarah, took it upon herself to make sure that I was cared for. She stood by my side while I endured test after test, especially until my mother could arrive. Sure enough, the dreaded Lumbar Puncture was suggested. Knowing what I knew about Meningitis, I knew that an LP was the only way to confirm this diagnosis. Sure enough, it was positive. I spent the better half of two weeks in the hospital working with my doctors and my mother to pin point what was going on with my body. Spinal Meningitis is rare. How does one get it three times in their life and still function? I was at a complete loss but unable to fully grasp the severity of the situation.

After being discharged, I slowly went back to “normal” life. I had no idea what was going on with my body. My doctors knew that something was off because of my blood work and my many underlying symptoms, but couldn’t find a diagnosis. However, I pushed on because it’s what I knew!  About 4-6 months after this hospitalization, it happened again. I had high fevers, the migraines with light sensitivity, the stiff neck, the shooting pain down my back, my joints were hurting to the point of immobility and I had developed this rash all over my body. I was rushed back to the hospital, where they encouraged another Lumbar Puncture. However, this LP was negative. Doctors discussed possible Aseptic Meningitis, but they were ultimately stumped. I could feel myself slipping into confusion and depression because I didn’t know how to handle all the stress while trying to be a successful college student. I knew giving up wasn’t an option, I had worked too hard. I had about a year left of school, and as challenging as it was, I wanted my degree.

Spring 2012. Within the next 6 months, I went through the process of applying for internships. I was so passionate about working with children in the hospital. Helping them understand what they were experiencing and how to cope with their diagnosis through play therapy. I applied to internships all across the United States! Shortly after, I found that there was a place in my heart for children experiencing child abuse and neglect. In addition to my Child Life internships, I began searching for alternative internships working with child abuse and neglect. I was so scared with my health being so rocky, that I wouldn’t be able to begin or even complete an internship. Therefore, I wanted to stay closer to family. Finally, I was accepted into an internship at the Saint Louis Crisis Nursery in St. Charles, Missouri. I was ecstatic! After moving to St. Louis in the summer of 2012, I had everything set to begin my internship! It was the first week and everything hit again. I had high fevers of 103-104, the stiff neck, headaches, back pain, immobility due to joint pain, rash, etc. How could this be? This was supposed to be a fresh start, why would my body do this to me? Sure enough, I went through the motions again. Thankfully Sarah, who was there for me at school, had also moved to St. Louis. So, we were at it again! Emergency department, Lumbar puncture, no concrete diagnosis and ultimately leading to hospitalization. For the first time in my life I was on my own, beginning an internship which I just KNEW I could rock and my body was failing me. Something had to change. Sure enough, I did complete my 16 week internship, and I was hired on at the Saint Louis Crisis Nursery afterwards. Graduating in December 2012, I was so proud to say that I had a job right out of college! And not just any job, one that I was so passionate about!

My life continued on with flares every 4-6 months, being hospitalized for the same thing. Doctors had no idea, and I dreaded their look of doubt and uncertainty as we reviewed my ongoing symptoms. As if I was creating this in my mind. I chose to take matters in to my own hands and begin my own research. I knew that particular health system was not for me, so I started researching doctors in the area who had experience with abnormalities, and doctors who by their reviews, may just take me seriously. Sure enough, I found a primary physician who was one for the record books! I began going to Mercy Health System in January 2013. I had no idea where to start, but I knew something was wrong and I needed Dr. Sarah Davis to help me. After the first initial meeting, she took me very seriously, advocating for me, calling me at home to check on me and referring me to specialists; rheumatologists, neurologists, ophthalmology, hematologists, you name it. In May 2013, I had the worst flare that I had ever had. I was rushed to the hospital with my typical symptoms, however, this time I was septic. Being admitted into the ICU, doctors were working tirelessly to figure out why I was so sick. Was it recurrent Meningitis? There’s no way that this 24-year-old woman could have recurrent Meningitis, but all the other diagnosis’ were being ruled out.  At this point, I began seeing a Rheumatologist at Saint Louis University. He was certain that I had a febrile disease, and was suspecting possible Bechet’s Syndrome or another form of Vasculitis because of my history of Uveitis, mouth ulcers, fevers and other symptoms. After seeing him for a year, I was on high doses of chronic steroids and ironically losing weight very quickly. Every time they would try to taper me off the Prednisone, I would end up in another flare. Ultimately causing my dosage to sky rocket again. I made an appointment with my primary care physician to have a very frank conversation. Although my Mercy Health Care physicians were trying, it was becoming quite evident that they couldn’t help me. We then chose to turn to Mayo Clinic in Rochester, MN. The best of the best, right? Surely if I was accepted then they would have the golden key waiting for me!

March 2014. I was finally accepted into Mayo Clinic and they wanted to see me immediately. We had an initial visit set up within a few days for two weeks out. I was so nervous! For you Twilight fans, I felt like I was going to see the Volturi! As if they were the God’s of the medical field and they could in fact help me. My mother and I drove up to Rochester and my first visit I spent two weeks at Mayo; 15 doctors, long appointments and countless tests. My mother and I ended up making the most out of it and turning much of the negative situation into a positive. However, it was exhausting. Continuously going through my story, explaining myself and feeling like I was getting blank stares. I often found myself wanting to tap the mic just to make sure that what I was saying was actually being heard. I had a 5-inch binder full of hard copies of my records. I was dragging it around daily like it was my small child. When in actuality, it kind of was! It was my life, ultimately my medical evidence! After having genetics testing, countless blood work, neurological exams, numerous scans and other various tests; my initial two weeks were up. They needed time to go over all the information and connect with the other doctors. After that, I had one more visit from Mayo. From that visit I found that I now had Glaucoma due to the high doses of Prednisone. Then they explained that they wanted to help me, but unfortunately, because I was on such high doses of Prednisone, my symptoms were being masked. In order to be seen by them again, I needed to taper myself off of the Prednisone then come back. Given that tapering off the drug caused for more flares, I was devastated. I felt that I had put all my eggs into one basket, and they had all fallen into a shattered mess.

April 2014. I felt I needed a whole life style change. I needed a change of scenery, I needed a new health care system that would talk with me instead of talking at me. I had an idea of the type of care that I wanted, but I wasn’t sure how to take the step. At the time, I was dating my husband, Matt. At this point, we had been together for a little over a year, and against all odds, we were in a long-distance relationship. He was my everything and I really wanted to spend my life with him. I had this vague, crazy idea of moving to North Carolina to be with him and possibly a new medical outlook? Given that my family, career and friends were all in Missouri, I needed a little more convincing. I began doing research into the state, and the medical facilities that were offered. I tried to get some referrals from my doctors, but really, no one knew anyone from North Carolina. However, they knew of Duke University and University of North Carolina. Could this be it? UNC and Duke. Two of our countries leading medical universities in one area. There had to be something! As I began my research, I began to fall in love with Duke. Their overall mission, their dedication, the patient rating scales. Maybe this was in fact my next move! Talking with Matt, we decided to go for it. We took a leap of faith and began planning the move. I began calling doctors and applying for jobs, and of course pitching this crazy idea to my family. After a lot of hurtles, we finally made the move in July 2014.

Starting at Duke was the best thing for my disease. It took a lot of explaining, changing physicians and ultimately a lot of patience. I found an outstanding Rheumatologist who openly admitted that this was a very rare case, but she wanted to help. Within the first year, she tapered me off of the Prednisone enough to switch me to Methotrexate, which is a chemotherapy drug often used for Autoimmune patients. I was on the Methotrexate for 15 months. It was some of the hardest months I had to deal with. With Matt by my side, we made it through. Then within that time, Matt had proposed to me and we were married on September 5, 2015. I never knew a man could be so patient, understanding and kind. He has helped me through some of the darkest times, really making this something that we work through together. As of Summer 2016, it was my goal to be off all medication by the end of the summer. Doctors mentioned that I was in “remission” from this “undiagnosed, rare disease,” and that if we wanted to start a family, now would be our time. By August, I was medication free. I was going to a chiropractor who helped me obtain a healthier path. I was the happiest I have been in such a long time. What an amazing feeling to be medication free, when you’ve been told for so long that this would be your life, constantly juggling medications, symptoms and side effects. Maybe we had conquered it!

After 6 months without medication, life became stressful. With the typical stress of life and the holidays, I could feel my body slowing down. A week after Thanksgiving, we lost my grandmother whom I was very close with. Afterwards, I had become ill with a severe sinus infection. One round of steroids, two rounds of antibiotics and my immune system was shot. During my 8^th week of the sinus infection, the high fevers began. I had all my usual symptoms and I was more than certain I was in a flare. A flare! For the first time in 2 years. I was devastated and in so much pain. Throughout the last 5 years, I have had 7 Lumbar Punctures’, on countless medications, endless doctors appointments and dreaded hospital visits. I was done. I didn’t want to do it anymore!

It was January 1^st when the fevers started, which we all know isn’t the right time for doctors. I tried to get into my specialists, then tried to manage my temperatures; alternating Tylenol, Ibuprofen, taking cold showers and laying on a bed of ice. Nothing was helping. Finally, Friday January 6^th, my 6^th day of high fevers and immense pain, my temperature peaked to 103.5 and there was nothing I could do. I called my doctor’s office at 3:00 am, and they immediately sent me to Duke University Hospital. After arguing with my Rheumatologist most of the week, stating that I was in a flare, she still did not believe me when I arrived at the hospital. She swore that it was a continuation of my sinus infection, telling the head of the Emergency Department that Rheumatology would not see me until they had a CT of my sinus cavities. Sure enough, the head of the Emergency Department was determined to prove her wrong. And, he did just that! Afterwards, Rheumatology finally came down to the Emergency Department to see me. With the same stumped, doubting look on his face as the many physicians before him, he just wasn’t sure. He stated that the Rheumatology department had a meeting that they all wanted to discuss my case. Then, he would be back shortly after to discuss my case further with my husband and I. A few hours later, he returned with the Rheumatology department head. They had concluded that I was in fact right, and currently experiencing a flare. After 12 hours in the Emergency Department, they chose to admit me. Discussing my past experiences, we worked together to create an action plan for treatment. High doses of Prednisone to knock out the high inflammation, in addition to pain management. However, this time, I was refusing a Lumbar Puncture. For the first time, I was heard! I ended up being hospitalized for 5 days. They completed countless blood tests, cultures, chest x-rays, then finally decided to complete a bone marrow biopsy. My blood levels were off the charts! They hadn’t seen blood tests like this before, and the doctors were spending hours at a time with me asking my thoughts and really trying to work with me. Once again, the doctors were completely baffled and confused, but I felt that we were making headway.

Here I am. Its January 14^th, 2017, only 6 days after my 28^th birthday. I am feeling lost and confused, once again. However, this time I feel a surge of energy and confidence. This disease is very much a part of my life; however, it does NOT control my life. I have a very long, confusing and somewhat tiring story. It has made me who I am today, introducing me to so many new people and new experiences. Although I do have my rough days, I cannot imagine my life without my disease. As of now, we don’t have any answers, only keys. We are still waiting on many tests to come back, but that’s okay. You know why? Because I am not giving up. I will never give up! Life is too short to continuously worry about what the next day may bring, or what issues may arise. There are so many children AND adults coping and dealing with what we “rare” folks deal with on a daily basis. We are unheard of, but that doesn’t make us weak. In fact, the openness and willingness to talk about our journeys makes us that much stronger. It brings us together as a unit, providing strength, love and encouragement to people whom we do not even know. But in our hearts, we understand. We see the pain, tears, joy and triumph we’ve all experienced. We celebrate together, and we each have such outstanding stories to share! We have loved ones by our side who are there to pull us up when we feel weak, and to laugh with us on the days where we feel whole. We were put on this journey for one reason or another, and it is ultimately our choice on how we fulfill it.

I am rare. And I am proud.