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Patient journeys to diagnosis and living with PAH

Lindsay, Byron, and Kathy are real patients with PAH. Each of their photos were used to create a unique collage that shows the pieces of their life and who they are as individuals, and not just patients with PAH.

Individual patient experience may vary. OPSUMIT® has a 9-year long-term safety, tolerability, and survival open-label extension study in patients with PAH.1

Patient profile: Lindsay collage artwork

Lindsay
High school math teacher
OPSUMIT® patient since 2013

Lindsay is a high school math teacher who loves the outdoors and spending time with her nieces.

In 2007, Lindsay noticed her episodes of shortness of breath had grown in frequency to the point where she could not climb 2 stairs without stopping for breath, which she knew wasn’t normal for a healthy 23-year-old. After a cardiologist conducted a battery of tests, including an RHC, she was diagnosed with PAH in 2008. Her treatment was switched to OPSUMIT® while it was still in clinical trials.

Even though Lindsay has PAH, it has not stopped her from working, taking walks, or yoga classes. She hopes sharing her story with students inspires them to overcome challenges. “I feel like a lot of people have a really hard time with this disease and I want people to know it can get better.”

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Patient profile: Byron collage artwork

Byron
Blues musician
OPSUMIT® patient since 2017

Byron, a father of 3, has played electric bass and the electric guitar professionally for more than 50 years. He plays at festivals, dance halls, and restaurants. Aside from the occasional shortness of breath he began to experience in 2010, his medical check-ups indicated he was generally healthy. Byron had no reason to suspect a life-altering chronic condition until his symptoms worsened in January 2013. During those more detailed tests, a physician assistant noticed an abnormality in Byron’s echocardiogram and ordered an RHC. The results confirmed Byron had PAH.

When his PAH was not well controlled, it hampered his ability to perform, but now he is able to play again. His message to other patients with PAH is clear. “There’s hope.”

Individual patient experiences may vary.

Patient profile: Kathy collage artwork

Kathy
Aspiring author
OPSUMIT® patient since 2019

Kathy is an animal lover and mother of 3. Before her PAH diagnosis, she enjoyed playing racquetball, studied laboratory animal science in college, and became a pet groomer.

In 2011, after several unusual medical experiences and misdiagnoses, it was discovered that she had an autoimmune condition, scleroderma. In late 2012, her rheumatologist noticed that her chest X-rays and MRI scan revealed an enlarged heart. Her rheumatologist referred her to a cardiologist who suspected the scleroderma had led to PAH, which was confirmed by an RHC.

In addition to other medication, Kathy began taking OPSUMIT® in 2019. “It gives me that inner peace knowing right now that I’m stable and can function...” These days, she enjoys encouraging other patients with PAH to be strong and find a support group. Kathy sits on the board of a pulmonary fibrosis support group and is also active in advocacy organizations. She is currently writing a memoir of her PAH experience.

Individual patient experiences may vary.

About the artist

Patrick Bremer is a creative from the UK chosen by Janssen PH to reimagine a campaign focused around how starting with the right foundational therapy impacts a patient’s life. As an artist who specializes in creating striking collages, he has been commissioned in the past by the likes of Google, The New Yorker, and AARP. Patrick’s unique portraiture style brings to life the pieces of a patient’s world and connects it to their experience with OPSUMIT®.

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MRI=magnetic resonance imaging; PAH=pulmonary arterial hypertension; RHC=right heart catheterization.
Reference: 1. Souza R, Delcroix M, Galié N, et al. Long-term safety, tolerability and survival in patients with pulmonary arterial hypertension treated with macitentan: results from the SERAPHIN open-label extension. Adv Ther. 2022;39(9):4374-4390

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