Bronchiectasis affects ~450,000 people in the United States but despite its prevalence, most have not heard of it. It’s a chronic lung disease, marked by irreversible airway damage and dilation and is characterized by exacerbations, or flares. Many patients withdraw from connections and conversations that could improve their health because they feel misunderstood and unheard by their friends, family, and even treatment teams.

Our brief was to create a resource that would allow people living with bronchiectasis feel recognized for the first time, empowering them to be self-advocates in their care.

SEEN was made available to any patient who opted in to receive educational communications from Insmed about bronchiectasis. By using this platform to help patients feel more confident speaking up, we also helped build a foundation of patients who we hope now feel empowered to speak up and ask about potential new treatments in the future.

Our target audience is the bronchiectasis community. These patients are primarily women in their 60s who feel depressed, alone, and unheard in managing their bronchiectasis symptoms. They are isolating to protect themselves and to shelter friends, family, and even their providers from the burdens and unpredictability of their disease. Years of disappointment have made them passive passengers to their disease. They need encouragement and tangible hope to take action in managing their bronchiectasis.

With SEEN, we are furthering Insmed’s commitment to putting patients first by creating a unique resource for bronchiectasis patients. SEEN was made in collaboration with four patients whose experiences represent the very real ups and downs of living with this chronic disease.

Each of SEEN’s 120 pages was meticulously designed to visually tell the stories of real people with bronchiectasis, presented in ways you cannot ignore. Every detail is all about helping them be seen.

The book’s full title is only revealed in sunlight using photo-reactive ink, which encourages a group of people who withdraw to come out of the shadows.

Each chapter starts with a photograph that’s obscured. As the reader learns more, they visually see more of our person living with bronchiectasis. From there, the 4 chapters contain design elements that help explore different themes throughout the bronchiectasis experience, such as searching for clues in a mysterious diagnosis or finding the bright spots in the darkness.

SEEN’s 13 custom fonts give each chapter a unique tone, and 18 hand-drawn illustrations reveal the bronchiectasis experience, from feeling isolated and alone to overcoming anxiety and rediscovering one’s voice.

SEEN reinforced Insmed’s commitment to putting patients first. With a host of other resources and educational materials, we unveiled the SEEN book on a day when all eyes were on bronchiectasis—the 2nd annual World Bronchiectasis Day.

The impact of SEEN became apparent immediately. Within a week of launch, we received thousands of requests for the book from patients, and we depleted our 10,000-unit inventory within 12 weeks, triggering a second print run of 13,500 books. These results far exceeded our expectations and goals, and the sign-ups haven't stopped yet.

In creating SEEN, we accomplished our objective to empower people living with bronchiectasis by amplifying their voices and making them feel seen, understood, and not alone. The 4 patients we featured in the book told us this book changed their lives, and we have already heard of other patients bringing this book with them to their doctor’s appointments.