CF Community Blog

Featured

The Unseen Struggles of CF

By Lindsey Tipsword April 13, 2021

The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.

Filter Posts By

Clear Filters

  1. Adding Medical Cannabis to My Care Plan

    By Sydney Sabol December 8, 2020

    After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I’ve noticed an improvement in both my mental and physical health.

  2. What I’ve Learned From 11 CF Care Centers in 21 Years

    By Jacqui Sjoberg June 18, 2020

    As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.

  3. A Doctor’s Perspective on CF Care

    By Patrick Flume, MD & Savannah Fuller March 30, 2020

    Patrick Flume, MD, is a pulmonologist and the director of the adult cystic fibrosis center at the Medical University of South Carolina and part of my care team. For National Doctor's Day, I had the opportunity to sit down with Dr. Flume and ask him some questions about CF, his approach to CF care, and how it's changed during his career.

    Topics:

  4. What I Learned About My Trikafta Weight Gain

    By Meagan Helmick March 6, 2020

    Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn’t alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn’t mean that I wasn’t grateful for all Trikafta has done for me.

  5. How Patient Surveys Made Our Care Team More Sensitive to a Single Voice

    By Allison Moreau, BS, RRT February 13, 2020

    The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.

  6. How I Found the Right Mental Health Counselor

    By Nicole Meier January 9, 2020

    A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
More Posts View All Posts

Follow Us On

Blog RSS

Interested in sharing your story on the blog?

Learn More