How to Survive When POTS is Just One of Your Rare Diseases

Having a rare disease like Addison’s is enough of a challenge for most people. Addison’s disease is a disorder of the adrenal glands which causes extreme fatigue.

Now, imagine having Postural Orthostatic Tachycardia Syndrome (POTS) on top of that. POTS syndrome symptoms include a drastic increase in heart rate upon standing, which leads to a whole host of problems like nausea and fainting.

But why stop there?

In our imaginary scenario, let’s say you also have gastroparesis, a digestive disease that prevents food from moving correctly through your system. Throw in celiac disease to really restrict the diet.

And while we’re at it, why not add neuropathy, a disorder of the nervous system that causes numbness, pain, and sensitivity?

Now let’s throw in a variety of disorders of the thoracic cavity, including a heart murmur and pectus excavatum, which causes a collapse of the ribs in the chest. We’ll top it all off with mastocytosis, an overgrowth of mast cells which can cause allergic reactions ranging from itching to anaphylactic shock.

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This seems to have escalated quickly… Source: www.giphy.com

Sounds ludicrous, right? Surely no one could have all those diseases, let alone survive them.

Tell that to Allison Kowaleski, a medical marvel.

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No, no! MEDICAL Marvel… Source: www.giphy.com

By age 22, Allison had debilitating fatigue and experienced extreme weight loss, dropping to a Body Mass Index (BMI) of 16.

Two years later, after being incorrectly diagnosed with anorexia and Grave’s disease, Allison finally received the diagnosis of Addison’s disease. She began the course of steroids prescribed and for a short while, she felt fantastic.

Then her health took a drastic turn. She was unable to keep down food or liquids, and she passed out so frequently that she was eventually confined to a wheelchair for her own safety. Her parents took her to the Mayo Clinic, hoping that world-class physicians could help their daughter.

It was there that she was diagnosed with POTS disease and the host of other illnesses that plagued her.

Allison Kowaleski and her husband Aaron postponed their wedding due to Allison's health, but finally married in 2015. Courtesy photo
Yet, all of these diagnoses haven’t stopped Allison from realizing her dreams, including getting married to her sweetheart, Aaron. Source: www.villagelife.com

Though having a diagnosis was a relief, treatment was more difficult than she imagined.

“The hard part is all the diseases work against each other,” she says. Treatment for one disorder causes a flare-up of another.

Not surprisingly, Addison’s and POTS plus the many other disorders Allison lives with, have had a profound negative impact on her life. Some of her medications impair her ability to drive, so she’s essentially home-bound and unable to get a job. She says she has lost friends because her lifestyle is so different. She even had to delay her wedding due to her illnesses.

Never giving up, Allison looks forward to the future. She and her husband hope to adopt a child, and Allison is fighting to increase rare disease awareness. She credits her husband and family with her remarkable survival.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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