Living With CFTreatments

The Gift of Time: My Trikafta Journey – by Jessica McDearman

Where I’ve Been After several years of infertility, I was finally living my greatest dream of being called “mama” by two precious little girls. My days were filled with the beautiful, messy responsibilities of motherhood – breastfeeding, rocking tired babies back to sleep in the middle of the night, dancing …

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Living With CFTreatments

Trikafta: Worth It? A Personal Story of Before & After – by Molly Baker

Much like the terms used when noting a date, referencing “B.C.” (Before Christ) & “A.D.”(anno domini), I often divide my life as a person with Cystic Fibrosis, or CF, into two parts: pre-Trikafta & post-Trikafta. The first 36 or so years of my life were spent without the development of …

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Living With CFTreatments

Trikafta, along with dogged perseverance, saved my life – by James Kain

I was born in Washington, D.C. in 1985, and was raised in a nearby community known as Reston, Virginia. By the time I was born, my older sister had just recently passed away from Cystic Fibrosis at the all too innocent age of eight. To say that her passing was …

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Living With CFTreatments

Trikafta’s Life Changing Effects – by Nathan Mundi

Trikafta truly is a life changing drug. My life has improved astronomically since starting Trikafta. I never would’ve thought this soon in my life I would have seen three pills a day take over all the treatments I used to do. Prior to Trikafta, I used to have to be …

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Living With CFTreatments

Trikafta, The Equalizer – by Ron Bartell

The Beginning My name is Ron, I am 48 years old, and I was diagnosed at birth with cystic fibrosis.  I was born roughly one month premature and given up for adoption at birth.  As a result of my adoption being finalized in New Jersey in 1977, the records were …

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Living With CFTreatments

It’s a Marathon Not a Sprint – by Nicholas Breton

Approximately 10 years ago, my mother had called me on the phone frantically telling me she had seen a news blurb about a cure for Cystic Fibrosis being found.  She is so hopeful of that day that she is more believing in news articles regardless of the misrepresentations that the …

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Alternative MedicineLiving With CFTreatments

How Breathwork Can Help Cystic Fibrosis

Deprived of a Beneficial Therapy? Although I’ve been in and out of hospitals since my diagnosis of Cystic Fibrosis at 9 years of age, I have never had a CF specialist of any kind teach me the basics on how to breathe correctly or optimally. This sounds a bit bizarre …

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AdheranceLiving With CFTreatments

DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)

**Note: this is not medical advice and this method has not been approved by any medical professionals or suppliers. It is just a workaround method used by someone with CF. It should only be tried on nebulizer parts that can be boiled** My DIY nebulizer sterilizer hack I have a confession: …

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AdvocacyAlternative MedicineGeneticsLiving With CFSupplementsTreatments

A New Hope for CF! (Planetary Biosciences Review – Jan 2018)

To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a 46 year old CFer with my original lungs, living in London, England. Following a virus in November last year, the Phantom Menace of mucous was giving me a hard time …

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FinancialResourcesTreatments

D3forME Transdermal Vitamin D Patch: do you qualify?

Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic Fibrosis Patient Assistance Program. Written by Tamika Grubbs, CF nurse consultant D3forMe proudly announces participation in Healthwell’s Cystic Fibrosis Patient Assistance Program. The D3forME Transdermal Patch is for patients who can’t absorb enough …

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