Rare disease community group leader in Central Texas raises concerns about COVID-19 vaccine

Coronavirus

AUSTIN (KXAN) — An Austin Woman with a rare disease is raising concerns about the COVID-19 vaccine, as it’s expected to reach the city this week.

Barbra Sonnen-Hernandez, is the founder of ‘Texas Rare Disease Community,’ which she created back in 2012 when she was diagnosed with Gullian-Barre Syndrome (GBS). This is a disease that attacks her immune system, causing temporary paralysis.

“So, I was in the hospital for a year in Austin,” Sonell-Hernandez said. “I was in a coma for months, and an [Intensive Care Unit] for six months.”

Sonnen-Hernandez said she’s lived with GBS for almost 10 years.

With a weak immune system, she told KXAN her doctor said she shouldn’t take the vaccine, since it’s unclear how it’ll affect her body.

“My doctor does not want me to, he strictly didn’t have any take the flu shot,” Sonnen-Hernandez said.

Sonnen-Hernandez said she’s worried those who participated in the vaccine-trials, don’t have rare diseases. Because of this, she questions if true side affects for those who do have rare diseases, haven’t been fully explored.

Through her organization, Sonnen-Hernandez said several others with rare diseases have concerns about whether they’ll be able to take the COVID-19 vaccine too.

“Yeah, we were definitely concerned,” she said. “We’ve had so many emails of some of the rare disease patients reaching out to get advice if they should take this vaccine, that’s coming over here soon. And they are checking with their doctors, but a lot of the response they’re getting back from doctors is a no,” Sonnen-Hernandez said. “No, because of the fact that they’re already undergoing a lot of treatments, they are taking a lot of medications, as it is, and they’ve taken them for so long that their body their immune system is already used to back.”

Having a weak immune system already, it’s what’s causing concern.

“I’ve got plenty of nerve damage,” Sonnen-Hernandez said. “So, it’s not strong enough to withhold some of these vaccines that we’re getting.”

As providers prepare for the distribution, nurses like Serena Bumpus, a member of the states vaccine advisory panel, are working to assure safety of it.

“We need to build trust and really actually rebuild trust in our healthcare system and just in medicine in general,” Bumpus said.

For now Sonnen-Hernandez said it may take her time to fully trust the vaccine.

“It is a waiting time for us,” she said. “I need to just see given some time and see what kind of reaction, people will get from this.”

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