Navigating Myositis and Interstitial Lung Disease

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Trusted Resource & Support for People Living with Myositis and ILD

The Pulmonary Fibrosis Foundation (PFF) is the nation’s leading pulmonary fibrosis (PF) and interstitial lung disease (ILD) patient education and advocacy organization. The PFF is committed to advancing improved care for patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.

Myositis-associated ILD brings unique challenges, but no one has to face them alone. The PFF is here to provide resources, education, and a supportive community. Below, three individuals share their journeys with myositis-associated ILD and how the PFF has made a difference in their lives.

Meet Dionn Tunis

Dionn first noticed unusual symptoms: muscle weakness in her shoulders, joint pain, and constant fatigue. After a series of blood tests and biopsies, doctors confirmed a diagnosis of polymyositis-associated ILD. The early days were difficult, marked by uncertainty and the realization that even medical professionals didn’t always have clear answers.

“As a patient being diagnosed with a new illness, you want your health care team to know everything,” Dionn recalls. “It took me a while to learn that no two patients are the same.” Through it all, family was a source of strength by asking her medical team questions to support her care and helping Dionn stay positive during the hardest times.

Support also came from the PFF. First introduced to the Foundation by her pulmonologist, Dionn didn’t explore the resources available until a late night of insomnia led her to the PFF website. “I never would have imagined my gray skies would turn blue from this wonderful support system.” Today, as a PFF Ambassador, Dionn is deeply connected to the PF community through support groups, webinars, and educational resources.

“The PFF really made me feel welcomed. From the CEO to all the staff, they truly care about you and your story. For us patients and staff at the Foundation, we are family.” Dionn wants others to know they are not alone, “There is support out there to help you in your process and people that care about you. My faith, my family, and the PFF give me strength every day and I’m crushin’ life!

 

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Meet Kimberly Branche

When Kimberly first began experiencing shortness of breath and fatigue, a chest exam revealed a nodule and scarring on her right lung. After she was given inhalers and referred to a pulmonologist, further testing raised concerns about cancer, leading to an extensive evaluation. After multiple consultations and collaboration with a rheumatologist, the medical team finally confirmed a diagnosis of polymyositis-associated ILD.

The news was overwhelming. There was so much information to take in while Kimberly was still trying to manage her everyday life. “I honestly didn’t know where to start,” Kimberly recalls. Facing frustrating delays for treatments and working with her care team to identify the best plan, the uncertainty of what was next only added to Kimberly’s exhaustion of navigating her new diagnosis.

Eventually, Kimberly discovered the PFF. The modules in PF Basics: Info for Newly Diagnosed Patients helped explain the disease and available resources, while support groups and advocacy opportunities created a sense of community for Kimberly. “From the moment I became involved, I realized how powerful it is to connect with people who truly understand your journey.”

Today, she encourages others to join a support group as soon as possible and to include family members in the process. Living with myositis-associated ILD is not easy, but family, advocacy, and community provide strength. “Don’t go through this alone. There is strength in connection and hope in knowing we are more than our diagnosis.”

Meet Shalice Williams

Shalice first noticed her symptoms in June 2023, when muscle weakness, swollen joints, and shortness of breath began to interfere with her daily life. “I couldn’t lift my arms above my head, grip anything, or even walk short distances without being out of breath.” Shalice recalls. After being admitted to the hospital and undergoing extensive testing, she was diagnosed with dermatomyositis/MDA5 with ILD just a few months later. With her lung function down to just 28%, even walking from her bedroom to the bathroom was overwhelming. “My pulmonologist was a godsend. She gave me space to grieve the life I had before ILD, and then we mapped out a treatment plan that included oxygen, walking, medication, and exercise.” Shalice turned to a women’s lung support group to connect with other women who were walking a similar path.

Over time, Shalice found the PFF, where resources such as PF Basics, webinars, and support groups helped her better understand her diagnosis. “I felt most connected to the PF community when I became a PFF Ambassador. That experience allowed me to meet extraordinary warriors who truly understand the challenges of ILD.” Today, her family and the PFF continue to give her hope. “Attitude plays a huge part in navigating this disease. Stay positive, listen to your body, and don’t give up. Keep your focus on becoming better, not bitter."

 

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Get Connected & Find Resources with the PFF

Finding the right information and support can feel overwhelming - the PFF is here to help! We provide resources designed to guide you through your PF journey. Explore the tools below and the pages of the PFF website to learn more:

  • Download our Fact Sheet on Myositis-Associated Interstitial Lung Disease. This fact sheet explains what myositis-associated ILD is, symptoms, causes, and how to manage the disease.

  • Get started with our PF Basics: Info for Newly Diagnosed Patients. PF Basics consists of six modules that share the fundamentals with people newly diagnosed with PF most want to know. Each module contains in-depth resources, so you’ll have many opportunities to take a deeper dive into issues you want to learn more about.

  • People living with lung disease often have lower than normal levels of oxygen in their blood. When levels drop to 88% or lower, a healthcare provider may order supplemental oxygen. To learn more about supplemental oxygen, review our Oxygen Therapy FAQs. 

  • Watch our webinar about Debunking Myths and Advancing Care for ILD related Autoimmune Diseases as a leading expert in the field, Dr. Gandiga, explores the latest developments in the diagnosis, treatment, and multidisciplinary care of connective tissue disease-related interstitial lung disease (CTD-ILD). This session highlights myths and misconceptions, emerging research, and collaborative strategies transforming patient outcomes in this complex overlap of specialties.

  • Discover the PFF Summit: The World’s Largest Conference on PF. Join us in Chicago from November 13-15 to hear from leading experts on how to navigate living with PF and ILD, and connect with other community members! 

  • Stay connected with us and up-to-date on the latest news from the PFF - Sign up for our communications as they cover a variety of topics including news about the Foundation, new clinical trials, treatment options, support groups, webinars, and more!

  • Have a question or looking for support? Contact the PFF Help Center, at 844.TalkPFF (844.825.5733) or email help@pulmonaryfibrosis.org. The PFF Help Center provides patients, caregivers, and healthcare providers with the latest medical information, communicates the availability of support services, and distributes information about other essential resources.