A man rides a bicycle away from the darkness and into the light

Cycling Across America with CF

I was diagnosed with CF at birth, and currently am 44. I am lucky enough to be part of the evolution of changing treatments. If I look back 30-40 years, I would have never dreamed we would be where we are, and hopefully, this is just the beginning.

I have always hidden my CF from others, I was afraid of what others would say, but things have changed.

Cycling for my health

Previously my treatment was antibiotics after antibiotics, and countless late-night hospital admissions due to bowel blockages which seemed to get progressively worse with age… my primary form of airway clearance was cycling. I rode to work and back every day, which was easy enough with a 28km round trip. But with covid and a new job resulting in a 70km round trip… I stopped cycling and my health declined.

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Making a change

Then I went on a gene modulator, and the coughing stopped, but the weight piled on… I looked in the mirror, and while I felt great, I didn’t recognize my body… seemed like my belly forgot I had CF and remembered I should have a “Dad Bod”…

I got back on the bike… first once a week, then twice.. three times… now I am able to commute 70km round trip, 3 times a week… with additional rides on the weekend. The medicine has given me back my 20’s and I am taking full advantage… I don’t know my limits anymore, and every week I am improving… I don’t cough anymore… NOTHING… AT ALL…

I don’t get CF infections anymore, unless my daughter brings us a surprise home from childcare, in which case the whole family gets it first. Everyone in the house had covid 2-3 times… I still haven’t…

A way to give back

While the medicine was the turning point and catalyst, what truly saved my life was cycling.

I am in the process of organising a charity Solo bicycle trip across the USA for next year (yes, I am going to do it alone, and document it), from Melbourne (Australia) to the CF Foundation in Maryland to say thank you. I feel that this achievement would not have been possible with out a gene modulator, but we need more publicity for those who can’t use it, and more research is required.

An impossible dream… perhaps, but way more impossible events have taken place already in my life not to give this a try.

CF is now my super power.

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