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Without data on how COVID vaccines affect chronically ill, community turns to app

Originally developed to connect people with chronic illnesses, the Healp app is sharing stories from users who got the vaccine to dispel fears.

WASHINGTON — There is no data yet on how the COVID-19 vaccines affect people with chronic illnesses and autoimmune diseases. Now, there's an app for that -- kind of.

D.C. area-based founder Elizabeth Tikoyan originally launched the Healp app in January 2020, after being diagnosed with Lyme disease and suffering long-term effects.

When she struggled to find anyone with a similar experience to connect with, she developed the app to do just that -- connect people all across the world with chronic illnesses.

It looks like a dating app, but each user shares their illness and what information they're hoping to learn. Then, they swipe accordingly.

“I wanted to live the best life I could with the health condition. And I knew like other people had answers," Tikoyan said. "And I wanted to seek them out.”

Now, it's sharing anecdotes from users who got the COVID-19 vaccine.

“It's nice to see -- oh, she has ulcerative colitis. And she was nervous, but she, she didn't have a reaction or whatever it might be," Chloe Colvard said.

Colvard herself has ulcerative colitis and other autoimmune conditions.

“I live on a day-to-day basis of not knowing how I'm going to feel when I wake up just from my autoimmune diseases," Colvard said. "And so then when you factor in, you know, a global pandemic that adds this extra level of uncertainty to your health.”

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People like Colvard and Tikoyan are at a higher risk of severe illness if they contract COVID-19.

Some, like Colvard, were eager to get the vaccine when it became available to adults with underlying health conditions -- even without concrete data on the effects.

Others, like Tikoyan, were nervous, unsure how it would impact them.

“There was a lot of fears among the chronic illness and autoimmune disease communities around answers regarding the vaccine," Tikoyan said. "Like are people responding well? If not, what are some of the reactions? Is it different than people who don't have my condition?”

So far, she said they've collected about 100 stories from users and are rotating posts. People can scroll through on their Instagram page, website, and soon on the Healp app. 

The survey asks questions like, "Were you worried about taking the vaccine?" and "How did you respond to each dose?"

As the world opens up, Tikoyan said the app is especially important.

“For a lot of people, opening up means going back to normal, but a lot of people with chronic illnesses, they're going to be experiencing a lot of the life we had with COVID," she said. "And if you're feeling lonely, isolated, and just need to connect to someone who understands and can hopefully be there for you, we're here for you. And for those people who are wanting to take the vaccine, and have questions and energy, just want to know other people's experiences. We have those stories.”

Both Tikoyan and Colvard said they got the Pfizer vaccine and had minimal side effects. They encourage everyone else to get vaccinated.

There are clinical trials in the works right now, studying the effect of different vaccines on autoimmune diseases.

The National Institutes of Health in Bethesda is currently recruiting people with and without immune disorders to participate in their trial.

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