Club CF 30+

People with CF who are LIVING, BREATHING and SUCCEEDING at 30+ may be very involved in their careers, climbing the corporate ladder and working on a relationship. Marriage, buying a home and starting a family are also common undertakings for people with CF, as they are living longer and benefiting from a better quality of life due to advances in therapies.

During their 30’s, CF patients may be doing more IV antibiotic therapies, more chest airway clearance therapies, looking into getting a Mediport to make things easier, maintaining their health through exercise and compliance, and coming up with clever ways to manage all of this while socializing.

If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.

September 04 2012

Andy Lipman

If you start off saying a child is special because she suffers from a handicap, that is a disservice because you are robbing her of what she might become on her own_Frank DeFord

My parents lost my sister to cystic fibrosis before I was born, so when I was diagnosed with that same disease at birth, my parents were understandably protective of me. They always sought out the best doctors at the best facilities available and learned as much about CF as possible. In spite of their constant, loving support, I often felt alienated when I was younger – and reading all the negative facts about my disease made it even worse.

As I grew up and started playing tennis in high school and intramural sports in college, I found myself feeling more and more comfortable allowing people into my life, allowing them into my world of cystic fibrosis. Sports helped my health and were a type of therapy for me. I have found exercise to be both physically and mentally therapeutic. Every time I work out or play a sport I feel like I am taking an active role in beating CF.

My toughest day with CF was the day I learned that my lung function was down severely while my wife was pregnant with our second child. I struggled trying to deal with my own mortality during such an important time in my family’s life. Although I did not deal well at the time, looking back I realize that going through that taught me how to effectively deal with my disease and the ups and downs that accompany it.

While I have gone through rough patches, I have remained compliant for most of my life. I take medications and do therapies regularly and try to stay as active as possible. I am constantly motivated by my wife and children. I want to experience every single one of their celebrations with them. I want to see my kids grow up and live for decades with my wife. My family pushes me to forget the statistics of my disease and to see every day I have with them as a gift; to push my way through the difficult days and live to see a cure.

My favorite:
Color is… green
Food is… sushi.
Holiday is… July
Movie is… Karate Kid
Musical artist is… Foo Fighters
Sports team is… Atlanta Braves
I love spending time with my kids, playing softball, and keeping fish tanks.
I am most proud of my marriage and two children, the three books I have written, and to be the first person with CF on the Georgia CF Board.
If I could visit anywhere in the world, I would go to Italy with my wife.
My family and friends would describe me as relentless.
If I could give someone just diagnosed with CF any advice, it would be… Do not read statistics – every CF case is unique. Work hard and appreciate your life. Doctors may be able to measure lung function, but they can’t measure your heart.

June 11 2012

Joe Sleeper

“Breathe Easy”

I was tested for and diagnosed with cystic fibrosis at the age of five when my younger sister was diagnosed. In spite of my parents’ encouragement for both of us to stay active and compliant, my sister was always sicker than I was. When I was seventeen, my fourteen year old sister passed away from the disease that we shared. I became despondent and lost almost all of my hope. Watching my sister die from CF convinced me that I would eventually suffer the same fate; that treatments and compliancy were a just delaying the inevitable and forcing me to waste the time that I did have.

My bad habits caught up to me when I was 27 years old – MY PFTs were at 30 and I weighed around 115 pounds. I knew that if I did not change my attitude and my lifestyle that my life would actually be over, so I made changes. I began to see my treatments and exercise as an investment in my well-being, as tools to extend my life. Now, I exercise regularly with my soon-to-be wife, Jennifer, at our local fitness center where I swim, lift weights, and do cardio. I have found that exercise positively affects my health and is the perfect addition to my medications and treatments.

For so long I lived my life thinking that I would never see thirty – but now I am moving into my mid-30s, have a job I love, and am marrying a woman I don’t always think I deserve. I am so thankful for my life and for my time here with the people I love. I know that my sister is proud of the way I have turned my life around and I can honestly say that I am proud of myself and happy with where I am in life.

My hobbies… riding motorcycles, photography, tattoos, live music, being outdoors, cooking delicious meals with my lady.
Favorites…
Color: orange
Holiday: Memorial Day
Movie: Pulp Fiction
Musical Artist: The Meters
If I could travel anywhere in the world, I would visit… the Mediterranean.
My friends and family would describe me as… geeky.

If I could give someone who was recently diagnosed any advice, it would be:
A CF diagnosis is not the end of the world – especially with all of the advances being made today. You will have to work harder than most people, but if you care for yourself, you can live a full, happy life.

 

February 13 2009

Karen Vega

“Cystic fibrosis has not determined my life; I have determined it for myself.”
 
My brother and I were both diagnosed with cystic fibrosis at a young age, but were fortunate because our parents did not treat us differently. I have always lived in New York City, but grew up specifically in the Bronx. I played soccer and was a cheerleader – both activities that kept me in great shape. My youth, while it was affected by CF, was not shaped by the disease.
 
I attended Fordham University and eventually graduated with a degree in accounting, and then worked on Wall Street for six years. I have trained and completed a New York City Marathon and continue to run and train to this day. None of these things would have been possible without the support of my family and their acceptance and encouragement.
 
I am now in the newest, and most exciting, stage of my life. My husband Alex and I have been married for six years and have twin boys, Jayden and Logan, who are now my full-time job. Prior to having children, my husband was tested to make sure he was not a carrier for CF. Both of my boys are healthy, and knowing that they are going to live long, full lives only makes me more committed to remaining medically compliant and physically healthy. With help from my family, I have been able to settle into a routine to make sure that both my boys and I are taken care of every day.
 
Cystic fibrosis has impacted my life and will continue to do so, but I believe that I will persevere and will never, ever let it run my life.
My favorite…
Holiday is Christmas.
Food is ice cream.
Color is purple.
If my family had to describe me in one word, they would say I am… determined.
My dream vacation is to visit Australia.
I love to scrapbook and run.
I can be found on Facebook and Cystic Life.
February 11 2009

Brian Johnson

“Dream big. Ride free. Breathe easy.”
 
I grew up in Southern Georgia, one of three boys, and was diagnosed with cystic fibrosis at the age of seven in 1979. I owe much of my determination and my health to my brothers, who never treated me differently and always encouraged me to participate in athletics. I played baseball, basketball, and soccer, and have always been a huge football fan. The main difference I saw in myself compared to other kids my age was that I had to grow up quickly and remain compliant in order to avoid the hospital.
 
I eventually earned a Bachelor’s degree in business administration from Valdasta State University where I met my wife, Christie. I am now a father to a beautiful daughter and, in spite of certain difficulties, feel blessed every day.
 
During a recent dark time in my life, I discovered something new – something that changed me. I started riding motorcycles and it has become a both a passion and a mission. I started an organization called “CF Riders” and our mission is to ride cross-country while spreading a message of inspiration and hope: that no one is bound by CF. My wife, my daughter, and I are taking the journey together with the goal of gaining followers and spreading my message far and wide.
 
My calling in life is to spread awareness and positivity while doing something I love. I know we will one day find a cure, and it is my hope that my organization can help real that goal. CF has never and will never hold me back.
 
Favorite Holiday: Christmas
Favorite Food: Sushi
Favorite Pastime: Baseball
Favorite Movie: Forrest Gump
One Word That Describes You: Perseverance
Role Models: Ronnie Sharpe and Jerry Cahill
Dream Vacation: Australia
You can find Brian on... Facebook, Twitter, cysticfibrosis.com and CFsocial.net
February 02 2009

Cris Dopher

“Keep moving forward.”
 
At four years old, I was diagnosed with cystic fibrosis. With my boyish good looks and southern Californian residency, I was chosen to be the poster child for the San Diego chapter of the Cystic Fibrosis Foundation. My face was put on CFF posters that were distributed throughout the foundation and greater CF community. Before I entered the sixth grade, my dad moved our family to Missouri, where I first learned the importance of exercising from CF doctors at the University of Missouri Columbia Hospital.
 
Unable to play sports during my first years of high school after a farming accident crushed my ankle, I found my passion in theatre. Soon I was designing sets as well as acting in my high school plays. After graduating from college, I attended graduate school at NYU and received my Masters in Fine Arts.
 
In the years following grad school, I noticed a progression in the severity of my disease. Last March, when I was 36 years old, I struggled with another exacerbation. Climbing a flight of stairs left me breathless, and I began to fear the worst. I started exercising daily and my IVs began to work – so I slowly got stronger, both mentally and physically.
 
Even though it still remains a challenge to take the appropriate amount of enzymes every day, and eat as my doctors instruct, I am much more compliant these days and rarely miss treatments. Now that I have CF-related diabetes, I am even more careful about my health. I believe that the importance of compliance is the equivalent of how much belief you have in yourself and in your future.
 
Now, at 37, I work as a professional lighting and set designer for department stores. Having CF and working as a set designer does put limitations on my exposure to dust, but never on my creativity. I spend my free time volunteering and fundraising for BEF, including running for Team Boomer annually. Making contributions to BEF allows me to stay connected to the CF community. All in all, I keep moving forward – in my work, in my relationships, and most importantly, in my healthcare.

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