Angie Smith of West Sunbury is many things: mother, daughter, teacher, advocate.

Her position as a professor of mental health and psychology nursing for La Roche University makes her an essential worker.

And her experiences as someone living with ulcerative colitis has made her a community leader.

“I had symptoms for years and years and years,” Smith said. “I was just misdiagnosed ... It's a little tricky to get an actual diagnosis.”

Smith, who was originally diagnosed in 2009, said she's been in remission for four years. She's been involved with the Western Pennsylvania/West Virginia Chapter of the Crohn's and Colitis Foundation for five.

Her volunteer and advocacy work through the organization was especially appreciated this year: Smith was voted the 2020 Adult Honored Hero.

“It was wonderful,” Smith said. “A great honor.”

An adult and adolescent Honored Hero is chosen by the chapter every year to recognize patients who have given time and energy to the Crohn's and Colitis Foundation.

It also acknowledges patients whose stories generate awareness about living with an inflammatory bowel disease (IBD).

IBD is an umbrella term for disorders that cause chronic inflammation of the digestive tract, according to the Mayo Clinic. IBD breaks down into two types: Crohn's disease and ulcerative colitis.

The former causes inflammation of the digestive tract lining. The latter causes long-term inflammation and ulcers in the colon and rectum.

Smith said many patients are uncomfortable discussing their condition.

But she believes having the opportunity to talk about it — particularly with people going through a similar situation — is key to managing it.

Smith said aside from sharing information about diagnoses, treatments and doctors, having an organization that connects patients and their families with others boosts mental health.

“(IBD) affects every part of your life,” Smith said. “Sometimes, I think a patient perspective is just helpful.”

IBD awareness

The communication triggered by the Crohn's and Colitis Foundation also serves a bigger purpose for dealing with IBD in society, according to Smith.

“If I can't talk about it and I can't educate you, then no one is going to learn,” Smith said.

One of the biggest ways the Crohn's and Colitis Foundation drums up awareness during the year is through the annual Take Steps walk. Chapters across the county hold walks for patients and their families, with goals to raise money for services and involve new people.

Smith, who's been part of the walk's planning committee for years, said the event took a new turn this summer.

“It's historically been in Pittsburgh,” Smith said. “We switched gears.”

The pandemic pushed the June 20 walk to a virtual format, with walkers tuning in remotely. Smith said while this year's event had 400 registrants compared to 2019's 800, getting an exact number of participants is difficult.

With the walk conducted via Facebook Live, patients could walk with as many people as they wanted.

“My family gathered and we walked here at home,” Smith said.

The Crohn's and Colitis Foundation locally has canceled other events open to the public, according to Smith, out of concern for public health. The cancellations revealed to Smith how little the general populace seems to know about IBD.

For instance, she said after the organization decided to cancel an event at the Beer Garden in Petrolia, people who planned to attend said they didn't know people with IBD have weakened immune systems — and may be more susceptible to contracting COVID-19.

“So many people are immunocompromised,” Smith said. “I would like to hope our public is more open to learning about stuff like this.”

She added, “I think it's always a good thing if somebody's willing to be open-minded.”

More funds needed

Despite the cancellation of a couple of major fundraisers so far this year, Smith said the chapter's raised about $140,000 for regional services to date. This is on par for last year's efforts.

The problem is the need for funding has spiked this year because of the pandemic. “Our patients' needs actually increased,” Smith said.

Specifically, Smith said calls made to the foundation's call center have gone up 1,200 percent since the start of the pandemic.

“Patients were having difficulty getting in to see their providers,” Smith said. “Appointments were canceled.”

Smith said the Crohn's and Colitis Foundation is now concentrating efforts on connecting patients with resources that may be limited because of COVID-19. The foundation's website and social media pages remain active and accessible, for both patients and supporters.

Smith said perhaps the single-most important thing people with IBD can do right now is take care of themselves. Staying on schedule for appointments and follow-ups is vital, she said.

“It's been a lot of change. Rapid change,” Smith said. “We're doing the best we can.”

For more information visti the Western Pennsylvania/West Virginia Chapter of the Crohn's and Colitis Foundation's website at www.crohnscolitisfoundation.org/chapters/wpawv