Heather Bell
Katherine Halberstadt and her multi-purpose service dog in training, a standard poodle puppy named Gustav Olivier, at the U.S. Capitol.
CHRISTIANSBURG – Katherine Halberstadt is a Christiansburg resident living with multiple forms of dysautonomia, the general term for disorders that disrupt a person’s autonomic nervous system (ANS).
According to the Cleaveland Clinic, dysautonomia can describe several disorders, each with varying symptoms, ranging from mild to severe.
“I have autonomic dysfunction; my body is unable to regulate my blood pressure, heart rate along with causing a rare gastric disease,” said Halberstadt. “I have frequent pre-syncope, syncope and some seizures from the severe hypotension and severe tackycardia. Postural Tackycardia Syndrome (POTS) is one of my dysautonomias. POTS has been getting national coverage due to cases more than doubling since the pandemic and continuing to rise.
Halberstadt recently spent the day on Capitol Hill as a patient advocate for Dysautonomia Advocacy Day, organized by Dysautonomia International, which is asking that the National Institute of Health’s Autonomic Lab not be shut down in 2025.
“It needs to stay funded and open for research and diagnostics to help patients and progress in more scientific understanding of dysautonomia that ranges from Postural Orthostatic Tackycardia (POTS), Orthostatic intolerance to pure autonomic failure that occurs with Parkinson’s disease, to name a few,” said Halberstadt. “My father died from a long battle with Parkinson’s disease.”
Halberstadt was diagnosed at the NIH autonomic lab and brought back for additional studies.
“One study was developed after they saw techniques I came up with, to delay syncope and regain awareness of my surroundings when I am back to being conscious,” she said. “More people are developing dysautonomia from long Covid. Closing that lab at such a time, must be stopped. Our country needs the highly advanced, technology and expertise of the autonomic lab at the NIH.”
Halberstadt said her day on Capitol Hill was a dream come true. Through the use of a wheelchair, her multi-purpose service dog in training, a standard poodle puppy named Gustav Olivier, and the support of her mother, she says she was able to make it through the day without passing out.
“Gustav alerted, got in my lap and did deep pressure therapy to help raise my blood pressure and stop a severe dysautonomia episode from occurring,” she said. “He even stayed on my lap for an entire meeting.”
“Many of my life goals and dreams are no longer possible,” Halberstadt said. “Getting to educate members of US Congress and their congressional staff about my dysautonomia conditions, spending a full day on Capitol Hill as a patient advocate, alongside Dysautonomia International and other patients was literally a dream come true.”
“It was incredibly fun but physically grueling,” she continued. “Seeing a historic committee room – I didn’t think I’d ever get to see it in person – towards the end of the day energized me to push on, as so many groundbreaking people have worked to create positive change before me. I’m thrilled I got to advocate for myself and dysautonomia patients nationwide, while spreading awareness about our not well-known conditions. It felt really good to play an active role in helping educate members of US Congress, while working for much needed federal support for vastly underfunded, often profoundly disabling, life altering dysautonomia conditions. Our nations democracy is, “by the people, for the people…” Policy and federal funding will come, as long as the people continue to show up and advocate for the greater good of our countries people. As long as my body cooperates, I’m looking forward to being back on Capital Hill, advocating for dysautonomia patients nationwide.”
The advocacy from Halberstadt and others has had an impact, but she says more work needs to be done.
“We requested they keep the autonomic fellowship program,” she said. “Currently only six programs exist in our nation. There’s a great paucity of board-certified autonomic specialists and physicians with knowledge of diagnosing and treating basic forms of dysautonomia.
“[We also requested] $10 million in federal funding for physician education, so doctors will have the knowledge to diagnose and treat patients; refer to an autonomic clinic if needed,” she added. “Patients wait a year or more to be seen at autonomic clinics. Further delaying diagnosis and treatment.”
“As a result of Dysautonomia Advocacy Day on The Hill, multiple congressional offices made formal requests for Dysautonomia Physician Education,” she concluded. “It’s being added to the preliminary Fiscal Year 2025 Budget (FY2025) but to make sure it stays, doesn’t get voted out in committee meeting, it’s important for everyone to call and email their US Congress senators and representatives.
“Members of US Congress are better able to make decisions to help constituents and our country, when they see and hear firsthand, about the impact of life with dysautonomia and the struggles faced getting a correct diagnosis, paucity of autonomic specialists and clinics in our nation. Having congressional offices witness a tiny bit of what we deal with every day is impactful.”
