The story of Hannah
Postural tachycardia syndrome, Ehlers Danlos Syndrome, Non-Epileptic Seizures, Mast Cell Activation Syndrome “undiagnosed”
I was a fighter from the beginning. I was born at 24 weeks gestation being 8 inches long and weighing nearly a pound. My family were told to not get to attached as I wasn’t expected to survive. However, I beat the odds and I thrived. But, not long after my birth, I was diagnosed with Astigmatism and Retinopathy of Prematurity – I had eye surgery to save my vision and (thanks to the surgeons) came out of surgery legally blind – but my family was grateful that I could see. The longer I was in the NICU, the more “issues” the staff (along with my family – who were all nurses) noticed. The doctors said that my joints were abnormally hypermobile, my skin was overly sensitive (I bruised easily and had reactions to adhesives or any kind of tape or dressing they used caused me to break out into a rash or hives. The doctors just thought that it was due to my prematurity. After spending the first 4 months of my life in the hospital – I was discharged.
Growing up, despite my poor vision and joint hypermobility, I loved to be active. I played soccer and other activities like kayaking, swimming, and wind surfing – plus living just outside the Adirondack Mountains meant that I did a lot of camping and other activities during the summer. I tried to live my life the best I could. However, as I grew up my family noticed that something wasn’t quite right with me. At age 7, I was walking weird and the right side of my body was weaker than my left. I was taken to a chiropractor and found out that my spine was “out of alignment” so the chiropractor had to readjust me spine – I continued to see the chiropractor until I was 11 years old (which is when I “graduated” from physical and occupational therapy – which I’d been doing since I was a toddler to help strengthen my body due to my prematurity). I started complaining about back pain and pain in my ankles and knees. By age 13, I had stopped playing soccer because I couldn’t keep up its my team mates due to the pain – which my pediatrician said was “growing pain”. While I had medical “issues” since birth – everything changed in 2010.
In early September 2010 (age 14), I started feeling ill. I was fatigued, had terrible muscle aches and headaches, I developed a fever and chills, and my throat was sore. My aunt took me to my pediatrician who brushed it off as a virus. But by December I wasn’t any better and my lymph nodes had become swollen so my aunt took me back to my pediatrician and demanded I get bloodwork done. Sure enough, 2 hours later, my pediatrician called and said I tested positive for mononucleosis (mono). He said that if I keep drinking enough fluids, eating healthy, and getting a lot of rest I’ll be better in no time. However, I never got better.
I began to experience a whole slew of symptoms: fatigue/malaise, body aches, shortness of breath, dizziness, headaches, nausea, abdominal pain, heat intolerance, difficulty chewing/swallowing, insomnia, weight fluctuations, and more. I went from a healthy, happy, athletic 14 year old to being stuck on the cough or in bed because I felt so sick I could hardly function. However, despite these debilitating symptoms, I still managed to go to school and was on the principle’s honor roll. But, at age 16, I started fainting whenever I stood up – sometimes up to 6 or 7 times per day. I was pale, weak, and exhausted. In my sophomore year of high school (2012-2013 – age 17) I fainted in gym class while getting off a stair stepper – hitting my head on the weight rack in the process (thankfully I wasn’t seriously injured – just a bump on the head). My aunt took me to my pediatrician and he ran bloodwork. Within a few hours he called my ant and told us to go to hematology ASAP. At hematology I was told I was severely anemia (my ferritin level was 5) and diagnosed me with Iron Deficiency Anemia. He directly admitted me to the hospital where I received 2 blood transfusions and stayed in the hospital overnight. After the blood transfusions, al out of the symptoms I’d been experiencing since I was 14 greatly improved or even disappeared. We all thought that all of these symptoms were due to the anemia. But, 2 weeks later, everything came crashing down. By age 18, I was barely able to function and could no longer attend school – so I had a tutor to help keep me from getting too behind in my schoolwork. My aunt eventually got me into Cleveland Clinic and on February 5th 2015 (my 19th birthday) I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Hypovolemia, Raynaurd’s Syndrome, and a form of neuropathy (I never found out what type it was. Over the next few years I was diagnosed with Ehlers Danlos Syndrome Hypermobile Type (hEDS), Non-Epileptic Seizures (NES) – along with a slew of related conditions: Glaucoma, Osteopenia, GERD, Vitamin D Deficiency, Cluster Headaches, Sleep Apnea, Fibromyalgia, Tic Disorder (similar to Tourette’s), Gastritis, and Cataracts. In early May 2018, I started having seizure-like activity ONLY after I faint. I spent also my 2 years trying to find a neurologist that was willing to make my case (countless neurologist’s refused to see me because I was “too complicated” or due to insurance). I did finally get into a neurologist but, due to my psych history (I’ve battled generalized anxiety, depression, bipolar disorder, among other mental health issues), I was told I had Psychogenic Non-Epileptic Seizures (PNES) or that I was a hypochondriac. The neurologist was very dismissive and refused to run further testing. My cardiologist completely disagreed with the neurologist (as did the other members of my mediCal team, plus my therapist and my psychiatrist) and he put the puzzle pieces together. He said that I am either having non-epileptic seizures caused by fainting OR I am experiencing convulsive syncope. Either way there not much they can do so I’ve had to learn to live with the seizures – unfortunately. I’ve been experiencing other weird symptoms over the last few years that don’t add up: pain at the base of my skull, pressure behind my eyes, scarring of my eyes, fixed pupils (my pupils don’t react to stimuli), muscle weakness, neck pain, among other symptoms. I was originally told I had cervical instability (more specifically: CranioCervical Instability (CCI) – which left me in a cervical collar for 7 months. But that diagnosis has recently been taken off the table. However, before I was wearing the cervical collar, I was having faint/seizure episodes up to 8 times per day. But, since June 2020, I have only had 12 faint/seizure episodes. So, we are still trying to figure out why the faint/seizure episodes improved as now they are back since I was told to stop wearing the cervical collar 3 weeks ago. I also turn blue from lack oxygen during these faint/seizure episodes – which we don’t understand why. In late summer 2017, I started having mouth and jaw pain along with sensitivity to hot or cold when eating/drinking. I went to a dentist and was told that my teeth were I demineralization (due to my EDS) and that they needed to be removed. The dentist said that no amount of root canals or crowns can fix this. We were astonished because – aside from 1 small cavity as a child – I had great dental hygiene. We looked for 2 more second opinions before accepting that my teeth needed to be removed. By the time I had the surgery my teeth were rotting in my mouth, the roots were dead, my wisdom teeth were impacted to the point that one couldn’t be removed as they would’ve had to remove some of my jaw bone. The dentist said that I have a very abnormally small jaw (possibly a defect), a very high pallet, and crowded teeth (he was the one who mentioned EDS to us). Since then I have gone through the denture process- which was a nightmare. I now have only tops that fit as my bottoms are useless. We wanted to do dental implants but they said my jaw is too small to do implants – plus my insurance refuses to pay for them so we’d have to pay out of pocket. We also learned that I am immunocompromised – meaning my immune system doesn’t work well. Because of this I have to wear a mask in public.
Today I am 25 years old and am still really struggling physically. I am on SSI, I can’t drive (mostly because of my vision) nor can I work, and I haven’t been able to continue to my education since graduating high school. I am in a electric wheelchair most of the time due to the faint/seizure episodes and frequent joint dislocations and subluxations caused by my EDS. I have so much going on physically that it’s truly overwhelming. I also do IV Saline Therapy (1 liter of saline over 2 hours 3 days per week) through a port in my chest to help manage my POTS symptoms and my hypovolemia (not enough plasma in the blood – low blood volume). I am currently on waiting list for a handicap accessible apartment in my area (wait can be anywhere from 6 months to 3 years) and am trying to be more independent. I am thinking of volunteering at our local CABVI (Central Association for the Blind and Visually Impaired). I want to give back to CABVI as I am registered for them and they helped me so much with accommodations for school since I was in kindergarten. They’ve done so much for me and I think that volunteering is my way of saying “thank you”. The director of CABVI (who I know very well) said they might even give me a part time job depending on how I do volunteering. They are so sweet and understanding – it’s heart touching. But, first I have to get into my own apartment (I currently live with my aunt and uncle) and get settled in (whenever that’ll be).
Despite my struggles and hardships Ihave always found comfort in writing poetry. I started writing poetry in middle school and all of my ELA teachers loved my work – always giving me an A. They always said that I speak from my heart when I write. In 2019 I was nominated for the Rising Star Award for the Dysautonomia Support Network’s Patient’s Choice Awards 2019 because of my poetry – I didn’t win but just being nominated was amazing. I’ve had several of my poems published on websites like The Reluctant Spoonie and Dysautonomia Support Network. I entered now of my poems in for the Ehlers Danlos Society’s Talent Show and was amazed at how many people voted for my poem – even though I didn’t win it was very eye opening on how much my poetry as effected others. Some of my poetry is hung up in my therapists office or in the waiting lounge at my doctor’s office. I wrote a poem based on a book back in my sophomore year in high school and was the only student who got an A. My teachers always called me an overachiever – and their right. I was 20 when I graduated high school (started school a year late due to my birthday, repeated 1st grade, repeated my junior year in high school due to my health) and during the ceremony I was awarded the “Courage and Perseverance Award” because I’d spent a good portion of my senior year (2016) in the hospital – yet I still managed to not only graduate with my class but also at the top of my class. I’ve been told many times that I should publish my poetry into a book as I capture what it feels like to not only live with chronic illness but also open up about change and how the world really treats those with disabilities. I never really thought my poetry was as good as everyone says it is. But, I’m starting to realize that maybe my poetry is as good as everyone says it is. My aunt keeps letting me to that I don’t see myself the way everyone else sees me – which is completely true. I’ve decided that when I go to college (if I do) I want to study literature and maybe do some creative writing or something.
I may have multiple chronic illnesses (and others that haven’t been officially diagnosed with) but I refuse to let them stop me from limb my life – even if my life is “different” than “normal” people lives. I may have days where I want to throw in the towel and give up – but where will that take me? I’m still struggling with accepting my new life but I am getting there.
Never give up hope.