Cystic Fibrosis Resources for Body, Mind and Soul

Take advantage of these six organizations with programs for both CF patients and their caregivers.

By Daniel Ellis-Ferris, New York, New York

Cystic fibrosis (CF) stresses the entire being of a patient which is why it’s important to look for resources that care for the mind, body, and spirit. Research has shown that spiritual health is an important part of the well-being of CF patients but holistic support can be hard to find.

Below are six resources that go beyond the basics and give physical, psychological as well as spiritual support.

1. Rock and Roll!
The Rock Cystic Fibrosis Foundation is an organization that provides help and hope through the power of music. Rock CF raises funds and awareness with benefit concerts and provides patients with subsidized instruments and lessons though their Rocks Back music program. Playing wind instruments and drums is proven to have positive effects on the respiratory and heart health of CF patients—and the music lifts the soul too!

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2. Breathe Easy
Breathing Room: The Art of Living with Cystic Fibrosis is a community-based project focused on healing and support for patients and caregivers using the arts. Among other multimedia art projects, Breathing Room recently published a book of images, artwork, stories and biographies of CF patients and caregivers. Tap into this network and join in fun!

3. Blogging for His Life
Ronnie Sharpe’s blog, “Run, Sickboy, Run,” records the story of a young man who considers his cystic fibrosis to be “a blessing.” Sharpe constantly seeks out and details different aspects of life with CF always with a positive attitude.

4. Self Care: Spirituality, Religion and Well-Being
The Peter Judge CF Quality of Life Program, hosted at Sofia University, is aimed at improving the lives for those who face CF every day. This program hosts a page on self-care for people with cystic fibrosis and a section on Spirituality, Religion and Well-Being. The program, collaborative effort of Cystic Fibrosis Research, Inc., the Institute of Transpersonal Psychology and Stanford University, also offers a weekly CF Caregivers’ support group at their campus in Palo Alto.

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5. Reach Out for Support, Education and Hope
CysticFibrosis.com, a large online community, is another collaborative initiative of the Cystic Fibrosis Research, Inc., Institute of Transpersonal Psychology and Stanford University). From reports on the latest research to recipes and fitness tips to a dedicated space for remembering those we have lost, this website provides an extensive community and a surfeit of resources.

6. Get Social
Forming a support structure is important for those with serious illnesses, and nowadays people often find that structure in online spaces. Here are several communities that can provide support and knowledge. The Blooming Rose Foundation was created to give hope to families following CF diagnosis by offering up-to-date research, links and ways to connect with others. Cysticlife.org and Cystic Fibrosis Voice are to fun and family-appropriate communities of CF patients and caregivers around the world.

Photos used by permission of Kyle Monk. © 2013 Kyle Monk.

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