top of page

Igniting Awareness and Accelerating the Recognition of Cystic Fibrosis in Adults for Improved Health Outcomes


Dear Members of the Medical Community,


As you finish another busy day, setting aside your white coat and stethoscope, I can only imagine the thoughts you carry with you about patients whose conditions seem puzzling.


During National Cystic Fibrosis Awareness Month, I want to emphasize a crucial message: Consider CF N.O.W! (No Opportunity Wasted)* This urgent call to action is for providers with patients whose persistent symptoms have remained puzzling and have not resolved through usual medical channels no matter the specialists they've seen—from pulmonology, gastroenterology to otolaryngology, from endocrinology to psychology, and beyond.


CF knows no boundaries—it can affect individuals of all ages, races, and ethnicities. Undiagnosed CF in adult patients is a pressing concern as knowledge gaps about the disease persist, subjecting patients to a diagnostic odyssey that impacts their quality of life and also puts some at risk for irreversible organ damage.


While not every patient will be diagnosed with CF, please keep an open mind. CF is a genetic disease, so use your clinical judgment and the patient's symptoms to assemble their health puzzle. Don't let preconceived barriers or assumptions impede you from ordering CF tests for adult patients:

  • A sweat test is painless and a reliable way to diagnose CF.

  • Ambry Genetics is one of many labs that perform diagnostic testing for CF.

  • The Mutation Analysis Program (MAP) provides free genetic testing to people with confirmed cystic fibrosis to help identify their CF gene mutations or variants.

  • CFTR2 is a website that provides information to the general public about specific CF mutations or variants.


There are resources about CF that are accessible to both providers and patients. A nationwide network of over 130 Cystic Fibrosis Foundation-accredited care centers is available for clinical inquiries. Find a CF center near you on the Cystic Fibrosis Foundation website. Additionally, newly diagnosed CF adults can access educational and support services through the Cystic Fibrosis Research Institute.


As a healthcare provider, you can make a significant difference in a patient's life. Please take the initiative to Consider CF N.O.W! One provider's decision to consider CF for my health had a positive impact, helping to connect many pieces of my health puzzle. I hope you can offer other patients the same opportunity I had through your awareness of CF in adults and your care.


Sincerely,

A Person Diagnosed with CF at Age 40

 

* The Consider CF N.O.W! (No Opportunity Wasted) Initiative is a project by Halite Solutions Group dedicated to addressing critical gaps in CF symptom recognition in adults. Through a public awareness campaign, we aim to educate healthcare providers, foster positive change, and improve patient outcomes through enhanced collaboration and knowledge sharing.


For questions about the Consider CF N.O.W! Initiative, email kristina@halitesolutionsgroup.org

17 views0 comments

Comments


bottom of page