Wednesday, March 2, 2016

Rarely Diagnosed: Dysautonomia on Rare Disease Day 2016

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For Rare Disease Day, I had received the opportunity to guest post on the blog, mamasick, about my experiences with Dysautonomia at a young age. More specifically, the interview touches on its impacts on schooling and social life. 

Below is the full version of the post. 

Did you know that 30 million people in the United States are enduring life with a rare disease? Or did you know that 95% of rare diseases lack a single FDA approved treatment? February 29th is known as Rare Disease Day – a day to raise awareness for the complex illnesses that receive nothing but a blank stare when mentioned to the general population.

Quite the list of diagnoses has been claimed over the years. Some of them are rare. Others are just rarely diagnosed. That is why it has taken nearly 7 years to obtain accurate diagnoses that explains my myriad of health problems.

Let’s face it, there is nothing glamorous watching the world go black upon standing, frantically panting with a pulse near 200 while losing consciousness from a body failing to regulate blood pressure. That is a significant part of Dysautonomia, or Postural Orthostatic Tachycardia Syndrome (POTS). 

Dysautonomia is the term of an illness that describes the “malfunction of the autonomic nervous system.” The autonomic nervous system controls all of the body’s duties that occur automatically – all of the functions that most take for granted. That covers blood pressure, heart rate, breathing patterns, digestion, vision, the bladder and kidneys, and more. These body systems go from one extreme to the other. It can cause low blood pressure or high, tachycardia or bradycardia, complete paralysis of digestion or dumping syndrome, hyperventilation or involuntary breath holding. In Dysautonomia patients, it is as if someone is relentlessly flipping an internal on and off switch. [ x ]

There are multiple reasons for developing such an illness. Certain cases are brought on post viral. Others are from autoimmune diseases, Lyme Disease, other genetic conditions, or as a single entity. 

My name is Cheyanne. I am a 19-year-old residing in the sunny state of Florida. I have DysautonomiaMy case just so happens to be caused by Mast Cell Disease and Ehlers Danlos Syndrome. Although greatly blessed, my case is one of the less fortunate ones due to experiencing symptoms practically my entire life and continually progressing with age. On a positive note, this allows personal experience of the impacts Dysautonomia has throughout various stages of life. And let me be the first to inform you, the affects on social, school, and work life are vast!

The amount of support received by friends and family is immense, initially. That is, until months of treatments, pills, intravenous infusions turn to years. “Healthies,” as I prefer to term them, do not have time to entertain chronic illness. They have lives to live. Lives that are not conducive to Dysautonomia induced sick days and the incessant cancelling of plans.  I feel that this is an issue that greatly shocks the younger Dysautonomia population once diagnosed. 

Between the ages of 11 and 13 when my failing health was evident, my peers could not grasp the concept of chronic illness. The majority of my “friends” stopped calling, ceased making plans, and ignored me in the school hallwaysThey simply did not know what to say as spectators of their friend deteriorating before their eyes. Quite frankly, it scares them! It is a representation depicting that they are not invincible. Disease can creep up on anyone, despite age. 

Comparing the “healthy” Cheyanne to the “sick” Cheyannewas another notable issue towards the beginning of my diagnosis. It was exceptionally exacerbated during a sensitive time period like adolescence.  As I grew older relationships in spite of Dysautonomia became easier. Even with symptoms progressing with age, I was able to encounter new people. I noticed that new peers are more accepting. They cannot compare the sickly present to my former healthier self.

Illness at a young age adds a unique aspect to both friendships and romantic relationships alike. It forms closer bonds knowing that relationships do require increased effort. It easily rules out who truly cares. My current partner of over three years is a prime example. Although now both adults, what other teenage boy wouldn’t run for the hills as their girlfriend of only a couple months begins hysterically crying after showing up to school or a date with a feeding tube plastered to her face?  

Receiving a Dysautonomia diagnosis is undoubtedly harsh news to process. It does not indicate that life is over though. It is possible to pursue a future. However, education and work are definitely areas in my life that becoming ill has interfered with since my health decline began. 

The local middle school is not fond of students gallivanting in the hall and randomly fainting. So - I was given no choice but to begin a homeschooling education in the eighth grade. As I entered high school, my schooling became more erratic. A manageable plan was concocted though. For an hour and a half daily, I would attend the high school for one class period. I was also granted permission to attend the local community college for dual enrollment after passing a test to do so. Two days of the week I would partake in a class there. The remainder of my education every semester was completed through the online college courses or through online high school. I fought to ensure that the countless appointments, sick days, surgeries, and medical interventions did not deter my dreams. 

I did not have the normal high school experience. I never had the opportunity to become involved with extracurricular activities. I never, and still have not, had the chance to begin my first job. Pep rallies and high school sports games did not exist in my vocabulary. And only physically participating in one course a day does not necessarily lead to a strong social life. 

Regardless, I graduated high school this last May as valedictorian and five classes short of earning my AA degree in English. I received nearly a full ride scholarship to Rollins College in Winter Park, Florida. Life was good. With proper accommodations, I was set to begin dorm life. Everyone’s hopes were that my high school situation did not foreshadow my college experience. 

Truthfully, I never made it to Rollins. Instead, I spent what was supposedly going to be the best years of my life inpatient at the hospital after my Mast Cell Disease and Dysautonomia took a downwards spiral. 

As I write this interview, I am hooked up to J tube feeds, continuous IV fluids, multiple continuous IV medications, and other IV medications scheduled every six hours. I do not get to leave all of that behind at the hospital following discharge. My original plans may not have transpired. I may be paying more to go to a local college online than I would if I were able to attend Rollins. My biggest worry may not be about the next midterm exam or which party I want to make my grand appearance to. But my life is not over because of Dysautonomia and other health conditions diagnosedSick or healthy, God has a plan for my life. He does for you too.