A New CF Generation Begins

Posted by: 
Brian Callanan
Brian in the swing

Growing up, I remember how structured and regimented our treatments and medications were kept in striving to keep me as healthy as possible as much as possible with the hopes of medical advancements that would help that goal be more and more achievable with the hope of a cure being on the horizon of my lifetime.  These were the days when mucomyst and manual chest physiotherapy (postural drainage with clapping on my chest, sides and back) along with digestive enzymes were the only tools of daily disease management.

Brian and Billy

 

When I was in my early teens, I remember being enrolled on the clinical trial for DNAse, or Pulmozyme and the feeling of formerly dry, sticky mucus becoming liquified at such a rate that would at times trigger gagging because it was so much. However, looking back at that advancement in medicine, I recognize that I was a part of a new generation of the cystic fibrosis community, which had sadly left behind a girl in my town with CF who passed at age 12 (when I was age 8), as well as Jack Jacoby, a CF physician in New York City who also lived with CF and passed away in his early 40s. Pulmozyme came just a hair to late for them to benefit from such a drastic advancement.Brian teen

 

Recently, the newest significant advancement in CF treatment, Trikafta, was approved by the FDA for children 6-11 with eligible types of CF gene mutations.  This was (along with this medications predecesors including Kalydeco, Orkambi and Symdeko) the birth of a new generation for the majority of people born with CF.  These medications, which were the first of its kind to treat the root cause of mucus being insufficiently hydrated in CF, instead of treating the symptoms of the abnormality. 

Brian doing vest

 

For the roughly 90% of the CF population that Trikafta could potentially benefit, the original FDA approval of use with patients 12 years and older (especially adults that had withstood a lifetime of airway congestion and loss of lung function) would slow or stop further damage or deterioration from what had already progressed in their lifetime. However, the prospect of potentially minimizing or preventing damage in the lungs for children currently being born with CF is, in my eyes, a birth of a new generation once again. 

 

While we all hold our breath as best we can for a cure to cystic fibrosis, these advancements and those still in the pipeline that ideally benefit all CF patients regardless of disease genotype, will make the lifetime challenge more feasible to not only survive, but to even thrive while overcoming. Just the thought of children as young as six and seven having access now to such advanced treatments is the closest we have ever been to minimizing the effects of such a deadly lung disease for so many.  The continued minimization of CF effects is what I see as a the next era of life with CF until a cure is found. 

I look forward to even the next generation when not only can CF be cured in patients borth with the thousands of types of genetic mutations, but the subsequent generation (following that) when CF can be prevented from even existing in a new born at all.

Brian and Mom

 

Help Others Live STRONGER and LONGER- 

Brian cycling

 

 

Brian Callanan is now 43-years-old, and was diagnosed with cystic fibrosis at birth. He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.

 

 

 

 

                            

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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