Man with Cystic Fibrosis Races to Help Others – Part 1

“My biggest passion in life right now is our team and just trying to help those with CF to be active.”- Manny Goguen

Twenty-four-year-old Manny Goguen, a man living with cystic fibrosis (CF) since birth, is one of those people whose effortless positivity rubs off on you almost immediately. It doesn’t cross his mind to be anything but optimistic because his goals for himself and his family drive him to make a difference in the lives of those with CF.

Manny Goguen is one of 10 kids, third in line behind an older brother and sister. In terms of dealing with CF his entire life, he explains, “All I’ve known is life with CF. I guess I didn’t really notice being different until I was around 10 years old. I knew I took vitamins and medicines, different from my brothers and sisters, but it didn’t dawn on me because I was still outside playing all the time.”

Three Goguen brothers
Three of eight Goguen brothers: Manny, Tom and Peter

Manny’s younger brother Tom also has CF. Having each other has proven to be a huge advantage for both of them.

“Both Tom and I -he’s just a couple years younger than me- would go to doctor’s visits together and encourage each other to stay on our medications. It was always nice to have each other’s back. We always had each other’s backs.”

In addition to Manny and Tom’s amazing camaraderie in CF, Manny speaks warmly about the role his supportive family has played in his CF journey.

“My mom and dad never told us we couldn’t go out and play with our older brother and sister. So we grew up outside, all summer down at the pond, riding bikes, playing football and manhunt, and always staying active. That’s always helped us to stay on top of the disease– staying active.”

Manny and his family
Manny and his family

Eventually, Manny focused his energy on one particular sport: competitive cycling.

“As a kid, CF doesn’t affect you as much. As you get older, it tends to [take more of a toll]. When we got older, when I was about 12, my dad and older brother had been racing bicycles on the road. My dad got me my first bike and I instantly fell in love with it.”

Cycling has had a profound effect on Manny’s (and his brother Tom’s) health. Manny’s lung function is basically 110%, and Tom’s is pretty high too. They, and their doctor, attribute this to diligently sticking to their medications and being active all of the time with competitive cycling.

However previously, back when Manny was diagnosed and life expectancy for those with CF was 18 years, “doctors discouraged exercise for those with CF, assuming that their bodies couldn’t take the strain. Today it is much more known that exercise is helpful, but [Manny] still meets or hears about kids who don’t exercise.”

Manny wants to change that. His goal is to spread awareness about what exercise can do for those with CF—he wants to help as many people living with CF as possible.

He is now President of Race CF, an inspirational cycling movement, designed to help support persons and those living with CF. Manny is more than just devoted to this movement, which involves most of his family, and friends of those with CF.

“My biggest passion in life right now is our team and just trying to help those with CF to be active. That’s what really keeps me going. I know CF affects everyone a little bit differently. Both Tom and I have a severe form of CF and we (and one of our doctor’s) attribute our health success to cycling.”


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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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