When is cystic fibrosis awareness month

Masks are recommended. In-person events will have related virtual content to accommodate patients, who must stay distanced from each other to avoid cross-infection. With social media awareness, the CFF is asking patients, caregivers, parents, family, and friends to post personal stories related to the disease using the hashtag FacesOfCF.

The foundation is offering various Facebook cover photos, frames, and shareable facts for the community to use.

The conferences is aimed at scientists and clinicians, but the public is welcome to sign up and follow the May 12 event online.

BioNews, the publisher of this site, will return with its 31 Days of CF initiative this month. BioNews also will host an Instagram Live on May 27 at 7 p. Bridging the gap between education and the human connection begins with nourishing desires to develop understanding. The goal of awareness is to draw closer to each other.

The knowledge of how our bodies operate fulfills only a slice of our need to be seen in our entirety. Our souls cry out to be seen beyond our invisibility. What we long to have people see is not our unseen disease itself, but the parts of us that have been changed because of it.

Every breath taken is a gift; we combat anxiety, depression, and trauma daily; we power through neverending surgeries, tests, or hospitalizations. Sometimes breathing is our only feat of the day, yet surviving is enough. Our tenacity, perseverance, and valiance propel us forward into living each day despite how we feel. Longing for belonging in groups leaves us with the feeling of not being able to measure up. Watching from the sidelines as others live normal lives hinders our ability to join communities.

Awareness means honoring our individual path, devoid of expectations that fit into the prefabricated box of societal measurements based on health status, careers, and relationships. We are living each day. If we wait until we feel better, until we get the surgery, until we get the right medication, until we get a transplant … we will wait our life away and not actually live.

I started running again six weeks before transplant, on 6 liters of oxygen. Our goal should always be to approach people and situations with the intent to understand. Our society has been conditioned to look away from those who are suffering.

This mindset is counterintuitive to authentic connection. Remaining with others in their pain is how we bond on a deeper, more meaningful level. Resetting the precedence begins with changing perceptions, which creates inclusive communities. The message of awareness everyone needs? You matter. A digital behavior and nutrition intervention platform for children with cystic fibrosis was feasible and demonstrated high accessibility and satisfaction in clinical care among families and clinicians, researchers reported.

Healio News Pulmonology Cystic Fibrosis. Read next. May 10, Receive an email when new articles are posted on. Please provide your email address to receive an email when new articles are posted on.

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