A Portion of My Medical Story
My medical journey started before I can even remember. It would take years, unquantifiable pain, and multiple misdiagnoses before I would be appropriately diagnosed with dysautonomia. What I experienced in my adolescence was just a hint of what was to come in my adult life. It was the beginning of a trend of symptom masking and symptom treatment instead of proper diagnosis. This is how I became a Dysautonomia Warrior. My provided story doesn't include all of my health tribulations, but it offers a snippet to shed some light on my extensive medical journey.
From a young age, I experienced developmental delays that resulted in early intervention and speech therapy that continued into high school. I’ve been in an individualized education program (IEP) and special education through elementary, middle, and high school that also helped me excel through college. As a toddler, I had pneumonia and frequent fevers, a severe case of Epstein Barr Virus that caused me to miss the majority of kindergarten, and had severe urinary incontinence starting at a young age. I was receiving care from specialists around Boston even in my early elementary school days. After years and years of tests, doctors could not find a concrete diagnosis for why my bladder wasn’t fully functioning. What followed became years of being prescribed medication after medication, procedure after procedure, surgery after surgery, seeing specialist after specialist. This, combined with constant fatigue and exhaustion at an early age, caused me to experience constant hypnagogic hallucinations, sleep issues, and resulted in another incomplete diagnosis at a young age–this time, it was Idiopathic Hypersomnia and Periodic Limb Movement Disorder (PLMD). This was just the tip of the iceberg.
Elementary school began with peculiar pains in my joints, especially in my knees. These pains were initially thought to just be “growing pains” but continued to worsen. Then, in middle school gym class one day, I collided with another student and my knee was injured. This kicked off orthopedic and sports medicine surgeries and appointments that would continue for years. Local doctors at Boston Children’s Hospital could not figure out why I was experiencing so much pain, swelling, discoloration, and lack of full function in my knee at the age of 11 with no improvement despite intensive treatment. Physical therapy helped me get stronger, but would ultimately not improve the swelling or pain. Before a series of scans and tests eventually identified a series of tears in my knee, I was told that my MRIs were normal. Unfortunately, the tears that were eventually found required multiple surgeries over the years of 2001-2005. This would just be another incident in my complicated health history that would eventually lead to my dysautonomia diagnosis.
By the time I graduated high school, I had gone through numerous orthopedic physicians, pain clinic physicians, physical therapy, injections, procedures, surgeries, and spinal epidural infusions. In high school alone, I had multiple Peripheral Denervation surgeries on my knee. Between 2005-2011, I had multiple nerves removed in my right leg including the lateral and medial retinacular nerves, my entire saphenous nerve trunk, a calf peroneal neurectomy, and more. This allowed me to regain some mobility and reduced some pain and swelling, but I was never 100% healthy. I was desperate to be an athlete despite all of this and worked hard to regain my strength and mobility while still suffering through knee, foot, and hip pain, constant swelling, and more. I would even use a TENS unit while playing sports, even at the collegiate level.
Following this, my right hip began to have pain without any type of acute injury, which resulted in more surgeries on the hip throughout college and as a young adult. The summer after I graduated from high school was spent preparing for the biggest field hockey pre-season of my life. I trained all summer, pushing myself through constant pain, swelling, abnormal bladder function, unexplained heart palpitations, and pushed myself to the breaking point in order to prepare for the Clark University field hockey season. This was one of my lifelong dreams – to play field hockey in college. Despite the pain in my hip that was never resolved in high school, I tried to power through the season. Unfortunately, I began having pain in my right foot that was nearly identical to how my hip pain started- there was no acute trauma or injury that could have caused it. This resulted in daily work with trainers and eventually scans that showed stress fractures in my right foot. I was able to continue through the season but eventually, the pain and foot continued to worsen and I ended up in a cast for about eight months. My foot failed to heal after months of physical therapy, injections, walking boots, and eventually, I was forced to go through more surgeries – this time, for lengthening of multiple tendons and muscles, right gastrocnemius recession, right tarsal tunnel release, and repairing a few tears in the foot.
By the time I reached the age of 21, I was experiencing constant and acute right knee, right foot, and right hip pain, swelling, and discoloration that could not be resolved despite extensive medical intervention and treatment with no direct link in diagnoses and at times, completely unknown diagnoses. Despite all my treatment plans, every scan I had showed tears. Second opinions only resulted in doctors saying, “Nothing was wrong”. My pain level at this point was almost unmanageable. I went through test after test, procedure after procedure. It seemed like a series of unfortunate health events, but eventually, we discovered that there might be a common denominator: dysautonomia.
It wasn’t until around 2010 that my medical road led me to Dr. Bharam at Saint Vincent Hospital in New York City. Dr. Bharam performed surgery on my hip that eventually allowed me to play field hockey again until my need for hip surgeries began once again–this time from 2011-2013. This time around, I was able to receive care from Dr. Yen, a surgeon who trained under Dr. Bharam, at Boston Children’s Hospital. Dr. Yen was able to perform a complete hip revision and muscle lengthening, including iliotibial band release, Psoas release, an adductor longus release. Every surgery came with weeks in the hospital and months in rehabilitation. With Dr. Yen’s help, I was able to play 2 more seasons of collegiate field hockey, which allowed me to be the starting goalie for the max of 4 seasons.
A series of severe and mild concussions and other brain trauma, as well as my stint with Epstein Barr virus in kindergarten, would also ultimately be a large part of what propelled my dysautonomia to its current state.
All of this is to say that I was constantly in need of what I called “tune-ups”. Despite innumerable appointments and professional assessments, no one could ever figure out why I was experiencing these tears with no trauma along with having such difficult recovery periods. My medical case continued to be one large mystery.
This pattern of hospital visits, surgeries, rehab, tears, the need to lengthen multiple muscles and tendons in the entire right leg, etc. continued in my adult life. Throughout my orthopedic issues, my bladder continued to have problems as well. In retrospect, this would end up being the first red flag of my dysautonomia diagnosis. Starting at a young age, I experienced such uncontrollable incontinence that I became one of the youngest recipients of a Sacral Neuromodulation System to help stimulate my sacral nerves and improve my bladder retention. This was not the perfect solution, however. Due to playing contact sports, the device constantly was wrapping around my vertebrae and breaking unexpectedly, which resulted in more surgeries to unwrap wires and fix broken parts of my device.
Several doctors would continue to tell me “nothing was wrong” with strange cardiac, pulmonary, and gastrology symptoms throughout the entirety of my life. I had unexplained tachycardia that became more present in high school. With such an increased heart rate, I would become very dizzy, lightheaded, blurred vision, and disoriented. Cardiologists couldn’t pinpoint what was happening, but there was concern that I was playing sports at a collegiate level with such a high heart rate, so I started beta blocker medication. My gastrology issues would be present for as long as I can remember, and worsening in college and as a young adult, when I was trying to jumpstart my career after receiving my Master’s degree. To this day at the age of 35, I still have daily, life-altering nausea and motility issues.
As time passes, my vision and cognitive function have begun to decline. I cannot drive at night. I had a seizure in 2018 after receiving Botox on my bladder. I have Sjogren’s, which is common in patients with dysautonomia. I experience constant feelings of dehydration despite drinking huge quantities of water, hydration supplements, and Gatorade. This almost resulted in a misdiagnosis of diabetes insipidus.
With all these symptoms, my diagnoses varied over the years from unknown pain caused by Reflex Sympathetic Dystrophy (RSD), to Complex Regional Pain Syndrome (CRPS), and eventually even fibromyalgia. It took an urologist visit to finally diagnose me with dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS). In 2018, right before I turned 30, a new urologist to me, Dr. De at Mass General Hospital, suggested an AFT function test to check for dysautonomia and the umbrella of POTS, as well as a biopsy for small fiber polyneuropathy. During my AFT function test starting, I would pass out and wake up with nurses surrounding me. The change in my orthostatic position increased my heart rate and plummeted my blood pressure. This led to presyncope and eventually, to my passing out completely. It was clear that I was positive for something, but we still had to wait for my small fiber polyneuropathy biopsy.
Finally, after years of seemingly unrelated health complications, my biopsy tested positive for small fiber polyneuropathy. The pure relief I felt when I finally had a true diagnosis was exhilarating. After dozens of years, countless CT scans, MRIs, X-Rays, bone density (DEXA) scans, injections, constant pain, swelling, incontinence, therapy and more, I finally knew something about what was happening to me.
This was only the beginning of my “official” dysautonomia journey. My mom and I had always hypothesized that my plethora of medical conditions and injuries all stemmed from one common cause. To us, it was clear that everything was connected. Knowing the cause did not automatically mean I had a cure though. Even in 2024, little is known about the condition and to most people, dysautonomia is an umbrella term.
I can attest to this journey as a Dysautonomia Warrior. There are millions of stories coming out of support groups and the sheer lack of knowledge about what causes dysautonomia, the lack of care, and the lack of a cure. There is also a significant lack of physicians and researchers specializing in dysautonomia. There are less than a hundred doctors in the world who specialize in this, and even then, there is such a lack of understanding about the mechanisms that cause dysautonomia. The current treatments are not effective enough to improve a Dysautonomia Warrior’s quality of life that is needed for them to be a productive person in society.
This brings my story to today.
Today, I am a Dysautonomia Warrior. I had to step down from a job that had been my dream for years. Even with my medical conditions and impending disability, I did my best while working as a Director at a youth development nonprofit organization in Worcester. Despite my cognitive and physical decline, I worked long hours and did my best to dedicate as much time, effort, and care into the youth utilizing after-school and summer programming. I have since had to step down due to my symptoms even though it has been my dream to be a leader in the youth development field in Worcester.
Today, my story culminates into an adverse event that happened in February 2023. My current neurologist, Dr. Farhad, had been treating me with weekly intravenous immunoglobulin (IVIG) treatment to try to improve my mobility, strength, and stamina. At this point, I was relying both on my wheelchair and upright walker. Despite gaining more control of my mobility and improving my quality of life, this treatment came with high risks. Unfortunately, I ended up suffering from a number of side effects, including an allergy to Gama Guard. I switched to a new brand of IVIG but experienced months of extreme nausea and transient pain from the center of my chest to my left armpit area. The bad news is that I was so used to pain that I didn’t think much of it. The other bad news was that this turned out to be a precursor to a severe adverse cardiac and pulmonary reaction that was diagnosed by the ER cardiologist as a heart attack.
This was devastating to me. IVIG helped me dance with my husband at our wedding in October of 2022 and allowed me to have a wonderful honeymoon in Jamaica in December of 2022. My stamina increased, so I was better able to complete activities of daily living. My speech became better and more articulated. I regained some cognitive function. Weekly IVIG treatments gave me back some things that dysautonomia took away. Taking away IVIG took away all the progress I had made. But I know that this is also not the end of my fight as a Dysautonomia Warrior.
When I was younger, as I tried to fight through all the pain and discomfort as doctors could find no answers, I found inspiration in various ways through musical artists, athletes, and motivational phrases. My motto that brought me determination to push through all my medical adversity has been, “Never Surrender. Never Give Up. Never Admit Defeat.” This phrase motivated me throughout all of my health issues as I was also managing the life of a successful student-athlete, and later, as a leader in the youth development sector in the City of Worcester. Something Robin Roberts once said while battling cancer has always stuck with me and became my main inspiration behind starting Diss the Dys. Robin Roberts’ mother told her, “Make your mess, your message” and this is really what drives Diss the Dys. I know that I am not alone in my struggles and fight with the devastating effects of dysautonomia. I believe that there is a way to improve the lives of people with dysautonomia and give them back some of their health. I want to turn my mess into a message so that there’s a greater possibility for a cure or treatment to be discovered. I want to be able to help people even if it means that a cure or treatment comes for future generations of Dysautonomia Warriors. I am determined to propel Dysautonomia awareness and Diss the Dys into an area where we can finally learn more about the autonomic nervous system and what causes dysautonomia to be so debilitating. We need more education for both patients and providers so that patients are more aware of what they will experience as their dysautonomia progresses. We need more education for providers so that they can diagnose patients more quickly before their quality of life decreases so much that they can barely function. We need more education so that patients with dysautonomia don’t have to suffer through misdiagnosis after misdiagnosis and being subjected to treatments that may not even be helping. We need dysautonomia to be “mainstream.”
I have dreamed of being a mover and shaker in the city of Worcester. I’ve dreamed of receiving a Key to the City of Worcester, reaching the Top 40 Under 40, and winning that Harvey Ball Smile Award. Even if I can’t achieve those goals now in my current medical condition, I know that dysautonomia is not going to take me down. But we have to work together so that others can feel hope and progress about the state of their dysautonomia disease. As someone who has lived the experience of lifelong dysautonomia, who suffered from misdiagnoses and endless treatments, I know what it means to have dysautonomia take over your life. However, I’m determined to turn my mess into a message to propel awareness of dysautonomia, in hopes to increase research, to gain more knowledge of dysautonomia and the autonomic nervous system, to have more effective medications specifically for dysautonomia, and someday, a cure!