At 23 years old, Hannah’s future was bright. She had recently graduated college and landed a job at a law firm in California. Though she was far from her family in Texas, she was excited to see what came next. But then, almost overnight, everything changed.
She was taking a shower when she began experiencing tightness in her chest. She also found she was having trouble breathing. “I thought I was having a heart attack,” she said. Scared and breathless, she asked her roommate to drive her to the hospital where doctors concluded she had double pneumonia. She was sent home with antibiotics, but they did little to help her symptoms. She went back to the doctor, who prescribed different antibiotics but, like before, she showed no improvement. This continued for weeks, Hannah going back and forth to the hospital, struggling to breathe and feeling sicker each time. A CT scan showed ground glass opacity on her lungs, which suggested that swelling or fluid was partially blocking the air space, but the doctors still thought it was pneumonia and told her follow up in a few weeks.
Hannah expressed her frustration and concern to her mom, and together they decided waiting was not an option. They packed up her apartment and Hannah and her dog flew back to Texas where she was immediately seen by her mother’s primary care physician.
A Shocking Diagnosis
Hannah’s new doctor was determined to find the answer. He ran a myriad of tests including extensive bloodwork that checked for the rare Jo-1 antibody. When it can back positive, she was sent to a pulmonologist and rheumatologist who could finally give Hannah some answers.
She was diagnosed with two rare and overlapping autoimmune diseases-antisynthetase syndrome and polymyositis. Along with having the Jo-1 antibody, interstitial lung disease is one of the most common signs of antisynthetase syndrome. In addition, the inflammation in the muscles caused by polymyositis, further limited Hannah’s ability to breathe. “My doctors told me I was literally one in a million,” she recalls.
Treating the Untreatable
Interstitial lung disease (ILD) is a group of more than 200 lung conditions that cause inflammation and/or scarring in the lung tissue. Over time, this damage to the lung tissue makes it harder for oxygen to get into the bloodstream, which causes shortness of breath, fatigue and reduced lung function. Treatment depends on the type of ILD and focuses on slowing disease progression, reducing inflammation, and managing symptoms. In some cases, lung transplantation may become necessary.
For Hannah, the right mix of medications and infusions has been hard to find. Suddenly, her life became about hospitals, specialists, scans and lab work. She spent a year in and out of the hospital, spending almost a week away from home every month. “My whole body would clench, I was freezing, I had a fever and my vitals were dropping, so we knew it was an infection,” she remembered.
During the height of the COVID‑19 pandemic, she went into septic shock and was treated on a COVID floor—even though she didn’t have COVID. It was during that time that she realized just how rare and misunderstood her condition was. “It was very frustrating because no one would believe what I said. Just because it’s rare, doesn’t mean it's not real.”
She was put on high doses of corticosteroids, like prednisone, which came with serious side effects like weight gain, weakened immunity and emotional strain. It felt like a never-ending cycle as doctors continued to try new steroid regiments and antibiotics. Her current treatment involves a lower dose of steroids, a regimented IV infusion similar to chemotherapy, and an intravenous immunoglobulin (IVIG) infusion every other week.
Coping with a New Reality
Though she continues to have hard days, Hannah is on the upswing. She still considers herself a “professional patient” because she can’t work, and her weeks are filled with doctors' appointments, scans and tests to monitor disease progression. But for the first time since diagnosis, she has been able to complete her 6-minute walk test without requiring the use of supplemental oxygen. She was evaluated for a lung transplant and currently qualifies. “It's been surreal, being thrown into a world of doctors and becoming disabled,” she said.
Being a Voice for the Rare Disease Community
Hannah found herself drawn to sharing her journey on social media. She was already part of the Type 1 diabetes community, having been diagnosed at age 11. When her lung disease became more visible, people from the chronic illness and disability communities began finding her. Instagram and TikTok helped Hannah connect with people living with many other lung diseases, autoimmune conditions and even organ transplant survivors. “It brought this really great support system that I wasn’t expecting,” she said. “I met my best friend through these online groups, and we never would have met if not for the community that the internet.”
The best part was that Hannah could be real about her circumstances and not just put on a brave face. “Of course I want to be as positive as possible, but I also want to be real about how hard my situation is because it is! I can’t chase my dog around the backyard because I almost immediately feel like I can’t breathe,” she said. “There are just moments where you're just like, well, shoot, I'm really sick.”
Because of her candor, people have reached out to let her know that her story has helped them push for answers, testing and proper care. She has also partnered with advocacy organizations like the American Lung Association to raise awareness about ILD, polymyositis, and other rare autoimmune diseases many people have never heard of. “It's one of the most rewarding and surprising things I have come to experience because of all this.”
Finding Comfort and Moving Foward
Hannah now lives with her parents, who are her biggest support system. They accompany her to appointments, help her manage medications, and help her perform any task that she may struggle with. On days when her body can’t keep up, she leans on books, crafts, and games, particularly adoring fantasy novels which give her a break from hospital walls and medical charts.
Above all, she continues to encourage others to live their truth and advocate for themselves. “You’re allowed to mourn the person you thought you’d be,” she said. “It may feel all overwhelming and unimaginable but if you surround yourself with people who will sit with you through the good and bad days, that is what really matters.”
Blog last updated: May 22, 2026
