Colleen Amann holds a picture of her daughter Molly, who was diagnosed with dysautonomia in 2016. Krysteana Scribner / The Forecaster

SCARBOROUGH — When Colleen Amann and her husband Pete Amann woke up on Sept. 22, 2013, to learn their 13-year-old daughter was feeling sick, they didn’t think much of it.

Little did they know it would take almost three years and six medical professionals before anyone could say what was wrong with Molly.

With a formal diagnosis of dysautonomia in 2016, Colleen now spends their time advocating for the surprisingly common illness that deeply affects everyday life for her child. She serves as the co-chair of Dysautonomia International’s Maine branch and worked to establish October as Dysautonomia Awareness Month in several areas of Maine, including Scarborough.

“My hope is that by sharing our journey and raising awareness, navigating dysautonomia doesn’t have to be so difficult and challenging for other patients,” Colleen said. “The more we talk about it and the more we are open and honest about it the more help we might receive in managing it. My hope is that one day, we will have a cure.”

Once given a proper diagnosis of dysautonomia in 2016, doctors were able to put Molly Amann on IV fluids and medications to target specific symptoms. Contributed

The illness affects the body’s ability to regulate nervous system functions such as temperature, breathing and heart rate. Often difficult to diagnose, symptoms include intestinal pain, fainting, headaches, chronic fatigue and feelings of confusion or disorientation. The disorder can result in disability or death if left untreated.

“It was a frightening and lonely journey for everyone,” Colleen said. “I wanted to scream at someone to listen to my kid, to help her. I wanted to take the pain away from her because it was unbearable to watch her suffer. I’ll never forget her siblings asking if Molly was going to die. That day changed our life forever.”

According to Dysautonomia International, an organization advocating for spreading awareness on the condition, over 70 million people worldwide are diagnosed with the nervous system disorder.

“It disrupted my life in a major way,” Molly said. “I missed a lot of school. I still got to see my friends, but we had to make adjustments and they would usually come visit me. I have daily symptoms – headaches, dizziness, stomach pain … there are bad days where I do lay in bed, but I’m determined to go to school and try to live a normal life.”

From 2013-2014, Molly was tested for several infectious diseases, including mononucleosis and Lyme disease, but all came back negative.

When she visited a cardiologist in 2014 about her accelerated heart rate and dizziness, she was diagnosed with postural orthostatic tachycardia, a condition that affects blood flow. However, medical professionals suspected something else was going on, too. A visit to the neurologist didn’t provide any more clarity.

Colleen said doctors questioned if anxiety or depression were the underlying cause of her physical symptoms. Baffled by the medical mystery, doctors asked Colleen if she was suffering from Munchausen syndrome by proxy, a psychological disorder considered to cause child abuse when a caretaker falsifies their child’s symptoms to reap attention or financial benefits.

“Sometimes I felt it would have been easier if Molly had a recognizable, named condition because people respond to that,” Colleen said. “Not knowing what was going on and not knowing how to describe what was going on was very isolating and scary.”

According to Dr. Tom Reynolds, a pediatric neurologist at Maine Medical Center who has had Molly as a long-term patient, the diagnosis was so difficult because symptoms are often non-specific.

“Dysautonomia is a label for a collection of symptoms … there’s currently no cure for it, so we target the various symptoms the patient is experiencing and try to find different ways to help them feel better,” he said. “The theory is that its immune system related, but there is no consensus in the scientific community at large about what exactly causes it. Treatment, for Molly, means IV fluids and medications.”

Molly Amann, pictured here celebrating her birthday in the hospital with her family, said she is grateful for the strong support system she’s had during difficult times. Contributed

Constantly plagued by pain and unable to get out of bed most days, Molly missed the entire eighth grade in 2013. Luckily, Colleen said, Molly was able to get accommodations through the Americans With Disabilities Act and work one-on-one with a tutor. The Scarborough school system allowed Molly to Skype those lessons when she wasn’t feeling well.

From 2014-2015, when she was in ninth grade, Molly missed 12 weeks of class due to debilitating symptoms. In 2015, less than a year before she would be diagnosed with dysautonomia, she started her sophomore year on a modified schedule. Worried about her daughter’s mental well-being, Colleen tried her best to integrate Molly into normal, everyday routines.

The school allowed Molly to come in twice a week to share lunch with her friends in a conference room rather than the cafeteria, where the bright lights and loud conversations would exacerbate her symptoms.

Now in her sophomore year of college, Molly still has daily symptoms. She goes to Maine Medical Center once a month and stays for two nights to get intravenous immune globulin treatment, during which antibodies are used to fight foreign substances.

Molly has spoken at several fundraisers and events about her diagnosis, and said she tells people that despite the painful experience, keeping a positive mindset is important to the healing process.

“I have a great support system and I wouldn’t have been able to do this if it weren’t for my family and friends,” she said. “They have been there to help get me out of bed on my hard days and go to school. My mom is my biggest supporter.”

Comments are not available on this story.

filed under: