Although her CT scans have remained stable since 2023, Erica Deazsa tells PEOPLE that her “body is still under attack”

NEED TO KNOW

• Erica Deazsa spent years living with unexplained symptoms before doctors discovered severe lung damage and diagnosed her with a rare autoimmune disease
• Now 31, she lives with a terminal condition and cannot undergo a lung transplant because of the risks to her weakened body
• Despite it all, Deazsa tells PEOPLE that she found peace and remains grateful for the life she has

Long before doctors diagnosed Erica Deazsa with antisynthetase syndrome and pulmonary fibrosis, she was dealing with weakness, pain, breathing problems and unexplained inflammation that made ordinary life increasingly difficult as a young adult.

By the time permanent scarring was uncovered in her lungs, the disease had already progressed to the point that Deazsa was being considered for a double-lung transplant. Now 31, Deazsa is living with terminal lung disease, all while trying to make peace with her body’s natural limits.

“I have the things that I need now, but when you get diagnosed you have to learn how to live disabled,” Deazsa tells PEOPLE exclusively.  

@ericadeazsa

@Victor Thompson I absolutely adore this prayer. I cried making this❤️🤞🏾antisynthetasesyndrome myositis pulmonaryfibrosis polyarthritis sjogrenssyndrome interstitiallungdisease

♬ I Pray – Victor Thompson

Deazsa can trace her health struggles back to her teenage years, when she experienced unexplained breathing problems, pain and weakness, including severe joint pain, inflammation, fatigue and skin problems.

She would wake up with her shoulders feeling as though they were broken, and she frequently dealt with swelling and flares without understanding their cause. But because doctors could not identify what was happening, she began searching for answers herself — wondering whether she had asthma or lupus — which eventually led to her being “considered a hypochondriac.”

However, for years no one actually did a chest scan to look at her lungs, so she had no way of knowing that the symptoms she was experiencing were connected to a larger autoimmune disease that had already taken hold in her body. Speaking to PEOPLE, Deazsa recalls experiencing symptoms as early as 2016, when she first collapsed in her dorm room after not being able to breathe.

Still, it would take several more years before she received an explanation.

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At the beginning of 2021, Deazsa was initially treated as though asthma was the reason for her breathing problems. But later that year, after finally seeing a primary-care doctor, bloodwork showed unusually high autoimmune markers, although doctors still “didn’t know” what was causing them.

The turning point came near the end of 2021, when Deazsa went to urgent care, yet again, because she could barely breathe and a chest scan revealed “horrible” scarring on her lungs.

As a result, doctors quickly referred her to a pulmonologist for further testing, which included CT scans and a bronchoscopy to help reveal the extent of the damage. In the end, the scans showed honeycombing, a pattern that occurs when extensive lung scarring changes the normal structure of the lungs.

Deazsa describes the discovery as “traumatic,” particularly because she recalls one of the doctors telling her, “‘If we would’ve caught this when you were 19, it wouldn’t be this bad.’”

By 2022, Deazsa was officially diagnosed with antisynthetase syndrome, a rare autoimmune disease in which the immune system attacks the body. According to the Cleveland Clinic, experts don’t know what causes it, and there’s no cure. She notes that the antisynthetase syndrome attacked her lungs, which led to interstitial lung disease.

In her case, it is PL-12-positive and has affected multiple parts of her body, including her muscles, joints, heart and lungs.

“So, my lungs are permanently damaged, scarred, stiff, and they don’t expand. I mean, they don’t expand like they should,” she shares.

Although at that time, doctors were preparing her for a double-lung transplant, treatment created another obstacle. According to Deazsa, the medications she was on made it feel like she was “dying faster.”

“If it was just a person who is strong in their body and they have weak lungs, they could risk those treatments,” she explains, but seeing how her body reacts to the treatments, she realized that going through with the transplant could pose serious risks to her already compromised immune system.

In her own judgment, Deazsa decided not to move forward with the transplant.

The effects of her illness, however, extend beyond her lungs. Deazsa also deals with myositis, an inflammatory disease that affects muscles, as well as problems with her swallowing because the muscles around her esophagus have been affected.

A transplant evaluation itself could carry significant risks for someone whose body is already weakened.

“Let’s just say if I am able to be on treatment and I go through the evaluations, I could potentially be a person that would either need a feeding tube temporarily post-transplant or forever because of the weakness of my swallowing,” she reveals.

The evaluations and surgery could also place significant strain on her body, and as Deazsa explains, “could trigger things and your health might not be well enough to keep up with the shock.”

Her doctors have also raised concerns about her heart, with a rheumatologist recently warning her that she “may not see 35.”

Today, Deazsa lives with severe physical limitations as well as bone marrow inflammation. Chronic fatigue is part of her daily life, and even basic tasks can require long periods of rest.

“I’m weak… I get pain fast. Chronic fatigue is my daily thing,” she says. “It takes me time to do things like just the basics, shower, get up or whatever. I have to lay back down between everything.”

Her most recent lung capacity test came back at 58% of the predicted normal value, which she admits is “not good.” Still, despite the severity of her condition, she notes that it hasn’t gotten worse, and her lung scans have remained stable since 2023.

And while stable does not mean healthy, the fact that the damage has not continued to decline has given Deazsa reason to remain grateful.

“What am I most proud of? Just living, being exactly where I am and not regretting it, and not feeling no type of way about it,” she tells PEOPLE. “I’m grateful for just being able to be in purpose.”

“Regardless of what I’m going through, this is the most peaceful and this is the most clarity that I’ve ever had in life,” Deazsa adds.

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