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 Fighting Fatigue

megan
Megan Huseby

UMD Student Helps Mayo Clinic With POTS Awareness

UMD junior Megan Huseby has a syndrome unknown to most people. Only five years ago, the Mayo Clinic's Dr. Phillip Fischer diagnosed Huseby with Postural Orthostatic Tachycardia Syndrome, or POTS. It affects one out of 100 young people, and it is estimated that over 100,000 Americans have it.

How do you know if you have POTS? The symptoms include nausea, weakness, extreme fatigue, migraines, blurry vision, forgetfulness, low blood pressure, and insomnia. The most distinctive symptoms are dizziness and fainting when one stands up. Before the Mayo Clinic successfully diagnosed Huseby with POTS, uninformed doctors told her that her symptoms were caused by stress, allergies, or other health factors.

Growing up, Huseby had always been more prone to sickness than an average child. By the time she entered the 10th grade, the fatigue, dizziness, and fainting spells kept her out of school almost completely. It was not until after a painful week of testing at Mayo Clinic that she was correctly diagnosed. Because of her severe symptoms, she was unable to continue going to high school, where she had been actively involved. She needed a homebound tutor.

When Huseby arrived in Dr. Fischer's office at the Mayo Clinic he announced she had the most severe case of POTS he had ever dealt with. He recommended a strict regime of exercise, diet, and medication. She worked hard to exercise 30 minutes a day, even on days when it was a struggle for her to get out of bed. The exercise was necessary to increase blood flow and strengthen her body.

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Others rallied to help. Huseby's church gave $50 to a number of individuals who were expected to turn the money into a good cause. Megan's brother, Matt, in an effort to help his sister, spent his $50 on stamps and envelopes for a fundraising letter. He raised over $3,000 from family and friends for POTS research.

Huseby wants to tell others about POTS. Even when POTS hit her the hardest during high school, she prepared a science fair project to explain the syndrome. She knows how much young people with POTS can suffer. Huseby was interviewed for a Medical Edge Video in an effort to raise POTS awareness (see link below). The video is shown on televison and other places like doctor's office waiting rooms. Megan remarked, "Matt helped me, and my church supported me, now I want to help others with POTS by raising awareness."

Huseby's recovery from POTS was slow. Her condition changed on a day-to-day basis. "I didn't acknowledge the improvement at first," Megan said, "At my worst, I could barely get dressed one day a week. Gradually, I started to feel better for longer periods before crashing. Finally, I felt well the majority of the time."

Two out of three people grow out of POTS between the ages of 16-21. "Luckily, I was one of them," Huseby said. She maintains full-time student status at UMD. However, Huseby will always have lingering symptoms of POTS. She takes medication for migraines, insomnia, blood flow, and dry eye, which must be taken on a strict schedule.

As a freshmen at UMD, Huseby was sick a lot, not from POTS, but because of her lack of exposure to many illnesses. Even now,when Huseby gets a slight cold, symptoms hit her harder. Megan smiled when she said that even though she still experiences symptoms, she no longer has to go to Mayo Clinic.

When Huseby was considering college, she worried about how her illness would affect her studies. However, when she came to tour the UMD campus, Huseby met Pam Griffin of Disability Resources and her worries vanished. "Pam told me to contact her whenever I needed something," Huseby said.

UMD's Office of Disability Resources offers a wide range of accommodations for students with permanent or temporary physical or mental impairments. They offer assistance with notetaking, interpreters, e-texts or alternative formats of textbooks, or any other accommodations students require. "The service that is used the most is test accomodations. That can vary from just a quiet room to extended time of varying amounts to a reader," said Program Director Penny Cragun. Last year, Disability Resources worked with over 400 students.

Cragun said that no other student has come to Disability Resources with POTS, but that she isn't surprised when a new condition pops up. "We work with students with a whole variety of conditions and it's seems like more and more students, like Megan, are coming to college with conditions that are not so common," she said.

Huseby is currently healthy and majoring in Unified Early Childhood Studies at UMD, only five years after she was diagnosed with POTS. She says she wouldn't be this successful without Disability Resources. Griffin helped Megan plan her schedule and would notify Huseby's professors when Huseby was too sick to make it to class. "My professors were more accommodating because I worked with Disability Services," Huseby said. She was touched by how concerned Griffin had been about her, "Pam recently retired, and I almost cried. I don't know what I would have done without her help and support."

http://POTS Informational Video  

Written by English major Katie Appel

 

UMD home page editor, Cheryl Reitan, creitan@d.umn.edu
NEW RELEASES, UMD media contact, Susan Latto, slatto@d.umn.edu, 218-726-8830

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