Club CF 20+

People with CF who are LIVING, BREATHING and SUCCEEDING at 20+ may be in school finishing up their education as an undergraduate or continuing their education in graduate school.

This may be a time when they are sorting out their life, job-hunting, interviewing for a job and jumping into the career world. Reality may be setting in as they start to become more independent and are living on their own, managing money, paying rent and getting proper medical insurance.

The 20’s are a great time to be socializing, networking, starting relationships, exercising and playing sports, as well as figuring out time management and compliance with treatments while working.

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.

December 17 2013

Susanne Noble

“Let go and let God,” is a phrase by which I have always tried to live my life. I was diagnosed at birth with cystic fibrosis, and was fortunate enough to be a part of a family that treated me as normally as possible while staying supportive. Growing up with CF has forced me to become a fighter and to be a much stronger person. While I never let CF prevent me from doing anything, it sometimes delays my goals or forces me to create completely new ones.

I have led an extremely active life with my friends and family that includes swimming, camping, softball, painting, and interior design. In spite of this, my health eventually declined and I need a double lung transplant. I was a high risk case – so there were many challenges before I was able to get my new lungs – but I never gave up hope. I have gone through a variety of hardships, both medically and personally, but have found the inner strength to move on with my life.

To anyone who has cystic fibrosis – Do not give up! You are worth the fight! CF does not own your life, you do.

My favorite…
Color is purple.
Food is crab legs.
Holiday is Christmas.
Movie is The Vow.
Song is I Won’t Give Up on Us by Jason Mraz.
Teams are the Braves and the Steelers.

If I could visit anywhere in the world, I would go to Australia.

My role models are my CF doctor, my donor, and my parents.

December 17 2013

Nicole Matthews

“Life is like a rose… there are thorns but it is still beautiful.”

I have always been a part of the CF community. Diagnosed at 22 months, I grew up knowing that I was just a little bit different, so I decided to really take part in the community into which I was born. My parents and I started our first CF Great Strides team when I was just 8 years old. My positive, can’t-quit attitude stems from this tremendous support that my parents gave me from the very beginning.

In spite of my family’s undying support and love, I did struggle when I was younger. Many of my teachers did not understand the seriousness of CF, and often thought that I was ‘faking it.’ In grade school, most of my young classmates did not understand me either and thought my constant cough was contagious. Luckily, as I grew up, more and more kids accepted me for who I was and not for my disease.

Now I am happier than ever. I teach ice skating, am an EMT and volunteer fire fighter, and have even written a book. My boyfriend has inspired me to look to the future – marriage, kids, the whole ‘perfect picture.’ I have made it a point to live my life to the fullest and count every single day as a blessing, and I encourage all of those with CF to do the same.

Favorites:
Color: purple
Food: mashed potatoes
Holiday: Christmas
Movie: The Nightmare Before Christmas
Musical Artist: Lady Gaga
Sports teams: The Bills and the Sabers

If I could visit anywhere in the world, I would go to… Germany.
Most people call me… Nicki or Smiley.
My friends and family would describe me as… entertaining.

If I could give someone recently diagnosed with CF any advice, it would be:
Don’t expect the worst. Stay involved in as many things as you can – the busier you are, the healthier you will be. And always remember that I am always here to talk!

December 06 2013

Ashley Coleman

“Press on.”

Growing up, I was pretty healthy for someone with cystic fibrosis – my biggest struggle was gaining weight and other GI (gastrointestinal) issues until I was diagnosed with CFRD (CF-related diabetes) at the age of 15. I played sports, attended school regularly, and my family never treated me like I was different.

As I have grown older, I came to the conclusion that I am not a victim of my disease – that everyone has a challenge in his or her life, and cystic fibrosis is mine. While I do not see myself as a victim, I have had to make some adjustments to my every day habits. For example, I have to be a little more aware of my surroundings – avoid public places where I know people will be smoking, planning ahead to make sure I always have the medications I need on me. I think I also have a special appreciate for life. I am twenty-six years old, and I try to be more compassionate toward others and to always remember that people have their own unique stories.

Every single day I wake up is a blessing. Realizing that each day is a gift, no matter how emotional I am feeling that day, is what has gotten me so far in life. I believe in taking charge of my health and my life – and working hard to stay positive.

If I had to give someone recently diagnosed with CF advice, I would tell them to have an open dialogue with your doctors and to educate yourself on your disease and treatments. Also remember to stay hopeful – you will have bad days, but the sun still rises.

Favorite Color – blue
Favorite Food – pizza
Favorite Movies – Mean Girls and Bridesmaids
I love all music! It inspires me.
My favorite runner is Ryan Hall.

If I could visit anywhere in the world, I would go to Israel.
My family and friends would describe me as… unstoppable.

August 04 2012

Sabrina Walker Smith

“I will never give up until the day I stop breathing.”

I have cystic fibrosis. I am a cancer survivor. And I am thankful for every day that I have been given here on this earth. My life has never been what most people would consider “normal.” I was born, raised, and still live in Anchorage, Alaska, a state most people in the United States consider foreign. Because I am one-fourth Tlingit Indian and in spite of my shaky health when I was young, my cystic fibrosis was not diagnosed until I was almost five years old. Surprisingly, my health was not adversely affected by the harsh winters in Alaska – but those winters did affect my ability to exercise regularly and stay active. I was fortunate enough to have a PE teacher for a father who was able to make sure that I was taking the correct medications and getting enough exercise while I was in grade school.

By the time I was in seventh grade, my parents did not have to encourage me to exercise. I made the decision to be a part of cross country, track & field, and cheerleading – all activities that I continued through high school. In high school, I realized that during my off-season, my health slowly declined, so I joined the track club as a way to maintain my health and my lung capacity.

When I was 18, I faced my most difficult obstacle when I was diagnosed with lymphoma and began receiving chemotherapy treatments to battle the cancer. I was dealing with both CF and cancer at the same time and my body wore down. Fortunately, I was able to beat cancer by staying complaint with ALL of my treatments and staying positive. I am happy to say that I am approaching my sixth year of remission.

While I have to constantly remain aware of my health and how my lifestyle affects it, my life is not dictated by my disease. I have become an avid runner and have found that competing in races pushes me to remain active and gives me a sense of accomplishment. My exercise routine varies along with the length of my upcoming race, but I try to run at least 40 miles a week. I take a cross fit class two to three times a week, go swimming  and rock climbing indoors, and plan to try cross-country skiing with my husband this winter.

I am fortunate to have had a wonderful support system throughout my life and I plan to always make them proud, stay healthy, and live the best life I can.

I love to… learn about my culture by reading and volunteering with the Alaskan Native Arts Foundation and I love volunteering and raising money for CF.
My two goals are… to live a long, happy life and to see a cure found for CF.
My favorite:
Color: blue
Food: pizza
Holiday: New Year’s Eve
Movie: Sabrina (with Audrey Hepburn)
Musical group: The Lumineers
Sport: hockey
If I could visit anywhere in the world, I would… travel all over Europe.
My friends and family call me… Breena or B, but my Grandma calls me Bean.
The people closest to me would call me… a survivor.
My role model… is anyone who can make light of a tough situation.
If I could give someone who was just diagnosed with CF some advice, it would be… At first, it will seem like too much to take in, but like anything else, if you give it time and stay positive, you will get through it. And always remember to help yourself by staying active and medically compliant.

August 01 2012

Jonny Simpson

“The only way is up.”
 

I grew up in Northern England, where we had extremely cold winters and rainy summers, and because of this weather, I was always prone to chest infections. Unfortunately, I had a hard head when I was younger. My family life at home was not ideal and I allowed that to negatively impact the way I dealt with cystic fibrosis. I was always the smaller, weaker child and never felt like I had any control over my future. I rebelled against my disease to feel control, hurting myself in the process.

When I was eighteen years old, I finally realized that if I did not change my life dramatically, I would not live much longer. I forced myself to deal with my issues, to eat healthy, exercise, and becoming medically compliant. I found my passion in the sport of bodybuilding – an activity that not only helps my lungs and weight gain but has also built my confidence and belief in myself.

Cystic fibrosis has given me a unique kind of passion for life, a special appreciation for every achievement I reach, whether big or small. I have been able to channel my insecurities into a sport that benefits both my mental and physical health. I am determined to be the best person I can be and to never rebel against CF again, but to appreciate it as the force behind my current and future successes.

My favorite…
Color is black.
Food is Goldbears.
Movie is Braveheart.
Song is Human Nature by Michael Jackson.
Sport is bodybuilding.
If I could travel anywhere, I would… safari in Africa.
My friends and family would describe me as… driven.
My role model is… Jerry Cahill. He has changed my life in so many ways.
If I could give someone recently diagnosed with cystic fibrosis any advice, it would be… Never give up on your goals or dreams – there are so many CF patients out there living full lives. All you need is confidence in that belief that you can do anything you put your mind to.

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