GREAT FALLS – Kiersten McCutchan has been active her whole life and involved in horseback riding, ballet, soccer, and running.
“I have been experiencing it since I was a child without realizing it,” McCutchan said of an illness that has remained mostly hidden for years.
McCutchan, who is currently living in Great Falls, said the symptoms would not stay for long periods of time so doctors were unable to see what she was going through.
“They are invisible because most of us will carry them around and you will not see us when we are debilitated,” McCutchan said.
While in her 20s, severe pain caused vision and hearing problems and kept her from sleeping. While McCutchan remained active, she started to notice the flare-ups were getting worse.
“Right before the major attack, I had a long sports season. I had a couple of marathons and half marathons. I ended the season with a backpacking trip and an ultra-marathon. I said, ‘Alright, time to give my body a break,’” McCutchan said.
This is when her hidden illnesses took over. She became completely disabled and she thought she would never be able to walk again. She had to be her own advocate to get answers.
“Doctors do not recommend that you go through the internet and look to self-diagnose. If I hadn’t, I would not be sitting here today,” McCutchan said.
McCutchan saw specialists at Stanford and UCSF, but she said the doctors would not take her seriously. She added she would push doctors to test her for different and rare illnesses.
“We were able to finally after two and a half decades of searching for answers, with probably having about 50 wrong diagnoses, that we finally arrived on postural orthostatic tachycardia syndrome, mast cell activation syndrome, and the dysautonomia,” McCutchan said.
Postural orthostatic tachycardia syndrome is a circulatory disorder that can make you feel faint and dizzy while mast cell activation syndrome is a condition in which the patient experiences episodes of allergic symptoms.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the autonomic nervous system.
McCutchan said there is no cure for these diseases, but hers are manageable. She told MTN News that the life-changing diagnosis and treatment helps her deal with the diseases.
“I take intravenous immune globulin treatment, which is basically plasma, to replace the antibodies that my body does not produce,” McCutchan said.
This can be a lifetime treatment, but McCutchan’s doctor is hopeful it will be different for her.
“I promised myself I would do a half ironman in 2016,” McCutchan said. It was a promise missed in 2016, but McCutchan is hopeful she’ll cross that finish line in the future.
McCutchan is currently writing a book about her experiences in hopes to help those who may not know they are living with invisible diseases.
Reporting by Margaret DeMarco for MTN News