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Healthy You

A Little-Known Disease and Diagnosis Changed Her Life

Tuesday, October 11, 2022 2:04 AM

By Mary Kiolbasa

Mary Kiolbasa with her dog

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 My story is like many others with this disease.  I was in high school, a multiple-sport competitive athlete and honors student.  One night after a volleyball game, I did not feel well, which was primarily from a bad headache.  By the next morning, I could barely sit or stand. 

I endured a very long year of testing, hospital stays and procedures while my doctors diligently tried to determine what was wrong with me. Finally, a tilt table test, in which they strapped me to a table then raised it to an upright position while monitoring my heart and blood pressure, signaled something was amiss with my nervous system.

I was diagnosed with postural orthostatic tachycardia or POTS, a form of dysautonomia, a disorder of the nervous system that regulates functions that we don’t consciously control, such as heart rate, blood pressure, sweating, digestion or body temperature. Difficulty with these functions often result in brain fog, fatigue, and pain, which results in up to 25% of patients being unable to attend school or work.

Those who have POTS may suffer from lightheadedness and fainting, brain fog, fatigue, exercise intolerance, headaches, heart palpitations, tremors or nausea.

The diagnosis was helpful and after struggling for so long, it was validating. But it was just one piece to the puzzle. There are many conditions that coincide with POTS, lifestyle changes to figure out, medications to take and many more issues that often arise for people living with a chronic disease.

The hardest part of an illness such as POTS is the dynamic nature.  POTS affects primarily women of school and working age and affects us all differently from day to day.  Patients may be well enough to see friends one day but need to cancel activities on another day. Or patients  may be well enough to walk one day but need help for longer outings.  The variation in symptoms and energy levels is very difficult to experience and often more difficult to explain to the people in our lives.

Emotionally, mentally, and physically, it is a multi-step and very complicated journey.  It changes who you are and often takes away many pieces of what you enjoyed. And yet, over time, it opens new doors and paths. I am who am I today because of my experience with POTS, including my career and many aspects of my volunteer work.  

Dysautonomia was previously thought to be a rare condition though it is now known to impact

over 70 million individuals. While not rare, it is still rarely known and can take on average 5 to 7 years to diagnose.

 

October is Dysautonomia Awareness Month. It is important to advocate for patients and medical awareness in this population. There are so many valuable things to tell this population because it is an underserved community.  Most importantly, I want to give them a message of hope, to know that we are here for them.

 

Mary Kiolbasa is an Occupational Therapist with the NorthShore Physical Medicine & Rehabilitation Services.

 

NorthShore has a team of dedicated doctors, rehabilitation professionals, and other allied health team members to support and serve this population. To find a specialist, visit the NorthShore Neurological Institute. If you would like to learn more, click on Dysautonomia International.