What Happens When I Can’t Afford the Care I Need to Stay Alive?
Today I couldn’t make an appointment with my primary care physician. Although I still feel new to the area where we live and am ... Read more
Updates
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There Are Many Ways to Participate in Cystic Fibrosis Awareness Month
The month of May rolls around and I find myself trying to take the perfect selfie. I want to capture not only my face, ... Read more -
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose ... Read more -
A Healthy Ambition: Leadership with Illness
In my journey to make sense of the world of work while having a life-limiting illness, I have often wondered, “What does it look ... Read more -
Bike Rides, Walkathons, Other Fundraising Events Mark CF Awareness Month
When it comes to disease “awareness” days, weeks, and months, 2019 is crammed with hundreds of them. May leads the calendar with 37 such designations, ... Read more
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Poor Oxygen Conditions May Promote P. aeruginosa Infection Over Other Pathogen in CF, Study Suggests
Poor oxygen conditions, a common trait in the lungs of cystic fibrosis (CF) patients, ... -
Early, Rapid BMI Increase May Affect Overall Growth of CF Children, Study Suggests
Rapid weight gain early in life may have a long-term negative impact on the ... -
In Cystic Fibrosis Awareness Month, I Look Back to Anticipate the Future
The night I received my first Hill-Rom Vest — at age 5 — was ... -
Phages, Viruses that Attack Bacteria, Are a Potential Therapy Against Infections, Case Report Suggests
The case report of a cystic fibrosis (CF) patient suggests that phages — viruses ... -
Trial of Nebulized CF Candidate Therapy Completes Single-ascending Dosing
The RESTORE-CF clinical trial investigating Translate Bio’s candidate therapy MRT5005 has completed the single-ascending dose regimen ... -
Being Sick Is Making Me Crazy (But Don’t Tell Anyone)
I have a theory: All truly sick people have mental illness. I’m not saying ...
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