Paul met Debbie

Welcome back, Luisa! Good to hear Trikafta is beneficial to you too.

Pretty good actually. I know my cf-nurse since 2002, she is the constant and golden factor in my team. My current pulmonologist is my doctor since a few years, and we communicate very well. He is my third pulmonologist in this hospital, the two before that got promoted away. And before that I had three different pulmonologists in my life in three…[Read more]

Jenny, when reading the article I thought of you immediately!

It is good to know that these side effects are on the agenda now, and that dose-reduction can be a good solution.

Trikafta has not influenced my mental health as far as I know. Only some light changes in my sleeping pattern with occasional problems of falling asleep in the night. I…[Read more]

I found a good article by Kelly Todd about the difficulties in patenting phages.

See https://scholarship.law.duke.edu/dlj/vol68/iss4/3/

• This is a promising therapy that has been developped and known for decades in the former soviet union, driven by a lack of many of the antibiotics of the free Western world. Currently, Russia, Georgia and Poland are known centers for phage development and use.
• I would  certainly consider phage therapy if needed. It seems to be very…

[Read more]

I don’t advocate CF in particular because I don’t identify with it. But I advocate life, of which CF is a natural part.

I can relate to how siblings can influence the lives of each other. My brother Rudy had CF and he died before I was born, so in a  way I also carry his torch and by living the life, contribute to what he started. Not as a pwcf,…[Read more]

What a great picture of Bautista!

Treatments are part and parcel of CF. I absorbed my treatments in my daily life to the extend that it doesn’t feel like “doing” anymore, it goes by itself. In the course of my 58 years with CF I learned how flexible I can get with this without harming, which depends on the sort of medication. CF is relatively…[Read more]

I found your Youtube channel, Sicily. It’s great to hear you make music, never stop singing!

Music taught me to be in the flow of creation. My mother taught me to play the piano when I was 5 years old and I never stopped since. Playing the piano dissolved my notion of ego, time and space into one. Making music is one of my  profound joys.

Great story, Rachel. Life is a dance indeed.

The only excercise I have been able to include in my routine, is the routine itself. I do what my body wants doing. It is fully in tune with its needs as long and because I don’t mess this up with thinking and planning.

So I happen to find myself walking our dog 4 times a day and doing everything that…[Read more]

This is a shortened version of a Talk titled  “58 years with CF” that can be read on our website here.

For those of you who want to know even more about liberation and how to “get there”, it’s is all revealed in another Tale titled “Falling Awake” on our website here. And in some of the later tales as well.

Of course, there is no way to “get…[Read more]