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USAISR researcher, woman with rare medical condition, forge 20-year friendship

By David DeKunder | 502nd Air Base Wing Public Affairs | Sept. 6, 2019


For nearly 20 years, a woman with a rare medical condition and a researcher at the U.S. Army Institute of Surgical Research at Joint Base San Antonio-Fort Sam Houston have shared an email correspondence that has helped in her fight against the disease.

Sarah Berkheimer, 40, has orthostatic intolerance, a rare disease that affects less than 200,000 people in the U.S., according to the Office of Rare Diseases of the National Institutes of Health. It is a condition in which the blood pools in the feet and legs while a person is sitting or standing, rather than returning to the heart and brain. Symptoms of orthostatic intolerance include dizziness, fatigue, nausea, fainting, pain, paleness of the face, heart palpitations and difficulty thinking and sleeping.

It was because of her condition that Berkheimer started her email correspondence with Dr. Victor A. Convertino, USAISR Senior Scientist for Combat Casualty Care Director, Battlefield Health & Trauma Center for Human Integrative Physiology, in 2002. To this day, they are still maintaining their email correspondence about Convertino’s research into devices that have helped in Berkheimer’s treatment of orthostatic intolerance, improving her quality of life with her debilitating condition.

Berkheimer said she is grateful for what Convertino has done for her in helping to treat her orthostatic intolerance.

“Over the years, he has used every opportunity he has had to help me in some way,” Berkheimer said. “Sharing his research and contacts with me has led to improved treatments for my health, including the ability to complete my college education. He has been a real blessing in my life.”

Convertino said Berkheimer is always asking questions and seeking information about orthostatic intolerance so she can share what she knows with others.

“One of the special characteristics of Sarah is that she is so inquisitive, she wants to find out about everything,” Convertino said. “From the emails going back 17 years I was going through, it reminded me that when she sent an email there would be anywhere from 10 to 20 questions. She was always asking tough questions so she could address those on her website. So we ended up having a back and forth exchange.”

Berkheimer’s health struggles started in 1994 when she was 15 years old, when she came down with the flu. She never recovered from it and continued to get sicker, struggling with symptoms she has had since including dizziness, fatigue, pain, headaches and difficulty thinking and sleeping. Because of her illness, she had to cut back and ultimately discontinue her educational, athletic and social activities.

Within six months, Berkheimer was diagnosed as having chronic fatigue syndrome. As the condition worsened, she had to drop out of high school and eventually earned a GED diploma.

After being diagnosed with chronic fatigue syndrome, Berkheimer started to read about the condition and learned in 2000 that the chronic illness had a connection with orthostatic intolerance. Through her research, Berkheimer learned that orthostatic intolerance can be a single illness, problem or symptom of many illnesses, including chronic fatigue syndrome. From the way the symptoms worsened by trying to sit or stand and based on a simple test of heart rate and blood pressure, Berkheimer concluded she had orthostatic intolerance.

In 2002, when Berkheimer started her email correspondence with Convertino, she was compiling research for a website she was starting about orthostatic intolerance to educate others about the condition and she wanted to include an article that had been published by Convertino in an aviation and aerospace medical journal in 1996. In her email to Convertino, she asked his permission to post the article on her website, which he did.

The article Berkheimer inquired about covered a study conducted by Convertino in 1992, who was working as a research scientist with NASA at the Kennedy Space Center in Florida at the time, on the use of an anti-g suit in treating a diabetic patient with orthostatic intolerance.

An anti-g suit is an anti-gravity garment, designed like a pair of chaps, worn by fighter pilots and astronauts. The device includes an air bladder and inflates over five areas of the body to provide pressure around the muscles to prevent blood from pooling in the feet and legs, helping to push blood back up the heart and brain.

The results from the study conducted by Convertino concluded that the patient, who wore an anti-g suit provided by NASA, benefited from wearing it by being able to stand without fainting.

Berkheimer had started wearing an anti-g suit in 2001 to treat her orthostatic intolerance after reading a book by a physician who wrote about 10 case histories of patients with chronic fatigue syndrome and doing further research on anti-gravity garment.

Berkheimer said when she started wearing an anti-g suit she noticed an improvement in her quality of life and well-being.

 “I started wearing the g-suit on Aug. 16, 2001,” Berkheimer said. “I had been sick for seven years and been bed bound for 22 hours a day. The g-suit was also life-changing in that it just doubled, tripled and quadrupled my day, depending on what I was doing, the amount of energy it took. It added hours I could be out of bed.”

Through her correspondence with Convertino, Berkheimer learned about another device to treat orthostatic intolerance – the impedance threshold device, or ITD, a small handheld inhaler that a person can breathe through that increases blood flow to the heart and brain by enhancing circulation. Berkheimer started using the ITD based on the recommendation of Convertino, who conducted research on the device from 2002 to 2006 along with Dr. Keith Lurie, who was at the University of Minnesota, and scientists at NASA.

Berkheimer said using the ITD has also improved her quality of life and sense of well-being by improving her blood circulation and recovery time from exertion – the times she was out of bed.

Convertino also connected Berkheimer with Dr. David Robertson, a world-renowned physician at the Vanderbilt University Autonomic Dysfunction Center, located in Nashville, Tennessee. In 2007, Berkheimer went to the center for two weeks where she participated in multiple research studies conducted by Robertson. The medical tests showed that she had Postural Orthostatic Tachycardia Syndrome, which is a type of orthostatic intolerance with a high heart rate.

As part of the research studies at Vanderbilt, Berkheimer was able to try several medications, including Inderal, which lowered her heart rate so her heart could pump more efficiently and allow blood to get to her brain.

In 2007, Convertino and Berkheimer, who is from Pennsylvania, met for the first time while Berkheimer was on a family trip in Fredericksburg, Texas, a 90-minute drive from San Antonio. The two met at a restaurant, accompanied by Convertino’s wife and Berkheimer’s mother.

“It was wonderful,” said Berkheimer about that first meeting with Convertino. “We probably talked for two hours. I got to ask him all about his research.”

Convertino said Berkheimer was inquisitive as usual during their first visit together.

“Sarah, classic to her emails, she said, ‘I have a few questions to ask you’ and she pulled out a piece of paper,” Convertino said. “We spent over an hour answering questions, all of which ended up one way or another on her website.”

The next time Convertino and Berkheimer would meet again was this past spring in College Station, Texas, the day after Berkheimer attended a graduation ceremony to receive her master’s degree in biostatistics from Texas A&M University. Berkheimer worked for five years to earn the degree, taking her courses online.

Previously she had earned an associate’s and bachelor’s degree from Excelsior College.

Convertino said Berkheimer is an inspiration to him because of her determination to live her life to the fullest despite her illness and for earning three college degrees.

“She had all the odds against her and she hung in there,” he said. “It took her this long because she could only do so much at a time, but she was persistent on it. That to me defines inspirational. I was inspired by that.”

Berkheimer said she is looking forward to the next phase of her life. She will continue to use her website to inform and give updates on the latest research on orthostatic intolerance to those like her who are living with the condition.

“It’s exciting to have one life dream accomplished,” Berkheimer said. “I’m done with school, but I need to figure out the best way to balance using my degree while taking care of my health.”

To learn more about orthostatic intolerance, Berkheimer and her story, visit http://www.oiresource.com/oi.htm.