Shannon Linford (left) at the Dysautonomia International annual conference. The Leesburg resident is an outspoken advocate for the Affordable Care Act.
Shannon Linford has spent most of her life overcoming a disease few people have heard of and even fewer can relate to. That’s hasn’t stopped her from fighting for those suffering from dysautonomia or the healthcare coverage she says has helped her do so.
Through her efforts, she now has a chance to do both alongside the nation’s most influential lawmakers.
Linford will accompany Virginia Sen. Tim Kaine (D) to President Donald Trump’s joint session of Congress address on Feb. 28. A Leesburg resident, Linford is hoping the once-in-a-lifetime opportunity to sit alongside a full meeting of Congress will help her efforts to protect others benefiting from the Affordable Care Act.
“I’m completely thrilled and it’s such an honor to be able to represent so many members of my patient community and so many of my friends at school who have chronic illnesses and benefit from the ACA,” Linford said. “I feel like being able to talk to my senator and represent them is pretty much the coolest honor I’ve had in my life.”
Linford has struggled with chronic illness since she was 10 and was diagnosed with dysautonomia, a rare disease affecting the nervous system, at age 20. The disease affects her physically, like limiting her ability to stand, and mentally. In spite of complications with the disease, as well as a battle with depression, Linford has worked hard to help others.
“If I can help somebody else know they’re not the only person in a certain situation, I feel it’s the best thing I can do for somebody, at least with what I’ve been given,” Linford said.
The 24-yard-old serves on the patient advisory board of Dysautonomia International and says her openness with her ailments has been among the best ways to help others.
Along with her efforts to help fellow patients, she has also worked to support the Affordable Care Act, commonly known as Obamacare. Trump, and many Republicans in the Senate and House, have supported repealing and replacing the ACA, saying the current system isn’t cost effective and is unsustainable in the long term.
This has led to nationwide protests and a flurry of activism from supporters — including Linford — who say the ACA has given her, and many others, a chance to live a healthier and happier life. She said she wouldn’t be able overcome the disease if it weren’t for ACA provisions that prevented insurance providers from denying coverage to clients with pre-existing conditions or stay on her parent’s plan until she was 26.
“I’m very passionate about talking about this to as many people as possible that we need to keep the ACA because people will lose their lives,” Linford said. “Every single person is going to be affected one way or another.”
A self-described political junkie, Linford was one of more than 1,000 Virginia’s to write a letter to Kaine telling him why they benefited from the ACA. Kaine, as well as most Democrats, has been a vocal supporter of the ACA, and read Linford’s letter in favor of maintaining the law on the Senate floor. Last week, he invited her as a guest of honor to attend the president’s address to Congress. There, she will have an unrivaled opportunity to share her story with the people who can preserve the healthcare law.
“I could not be more excited for this,” Linford said.