Karen lived with unexplained symptoms for decades. In 2021, worsening breathing and repeated urgent care visits led to a week in the hospital. Walking more than 200 feet left her feeling as though she might pass out. She knew something was terribly wrong.
She also had a widespread, reddish-orange rash that itched constantly, leaving small “islands” of unaffected skin. Connecting her skin symptoms and breathing problems took persistence and a team of specialists.
Her pulmonologist at the University of Rochester worked with a dermatologist and rheumatologist to find answers. Specialized blood tests, her skin symptoms, and her breathing difficulties helped the multidisciplinary team reach a diagnosis in January 2022. Karen learned she had both dermatomyositis and interstitial lung disease (ILD).
“Finding out I had a rare disease that few people had heard of was a relief. Then it was scary. Then it was, ‘What now?’” Karen said. “After decades of different symptoms, it was good to know it had a name.”
Finding the right treatment took time, but having answers gave Karen and her doctors a path forward. She credits her care team at the University of Rochester, a Center of Excellence, with helping her get the treatment and support she needs.
Continuing What She Loves
Karen’s husband, Mark, has been beside her through every adjustment. She calls him her hero, her best friend, and the person who is always there for her.
Both raised in Rochester, New York, they spend as much time as possible at Lake Ontario. One of Karen’s first photos with her portable oxygen concentrator, her “best friend these days,” was taken there.
ILD made walking difficult, so Karen bought a scooter to help them continue visiting the pier and beachfront together. Sun sensitivity has required adjustments, too, but she remains determined to enjoy the places and activities she loves.
“Although it was scary at first, I was determined not to let it stop me from doing what I love,” she said. “I hope others see that, with strength and support, you can continue pursuing what matters to you.”
Helping Others Find Their Way
A few online clicks led Karen to PF Warriors. Through Zoom meetings, personal stories, and other resources, she found people who understood and practical ideas that could help.
Karen misses the daily connection she once had through her work in telemarketing, but her instinct to listen and help remains.
“I took the PF Warriors Awareness Pledge because I want to help someone who may not know where to turn,” Karen said. “I still have a voice, and I want to use it to advocate and help others.”
Part of what she hopes to share is the value of having specialists work together.
“It truly takes a multidisciplinary team, including a dermatologist, pulmonologist, and rheumatologist, to manage my condition,” she said.
By sharing her experience, Karen hopes to help someone else find their way. Her message to someone newly diagnosed is simple:
“You are not alone. It is scary, but there are tools, resources, and other patients here to help. That is what the PF Warriors motto of Patients Helping Patients means.”
Karen lives in New York with her husband, Mark. She enjoys spending time at Lake Ontario and is sharing her experience living with dermatomyositis and ILD to help others find information, support, and the reassurance that they are not alone.
You’re not alone – join PF Warriors to connect with others who understand life with pulmonary fibrosis, and share your story.
Disclaimer
This blog is for informational purposes only and is not a substitute for professional medical advice. Always consult your doctor for medical concerns.