December 17 2013

Joe Hatch

"Be a force for good." 

I was not diagnosed with cystic fibrosis until September 1990 when I was thirty-four years old. I had many symptoms growing up – like stomach aches and constant colds – but my doctors never thought it could be anything serious. My cousin eventually had a child who was diagnosed with CF, which led to my own testing and diagnosis.

In spite of CF, I have always led a fulfilling and happy life. My wife and I travel as much as possible – and are always looking for something new to experience. I stay active by golfing, skiing, doing yard work, fishing, carpentry, and landscaping.

The main thing I want to accomplish in my lifetime is to help people create their own happiness. I think that I have been put on this earth to lead by example and to show people that they can have fulfilling, exciting lives. I recently started imagining and creating a program that will assist families in need by sending them to great wilderness camps and other locations that provide positive family vacation experiences. Again, I just want to help people – it is what gets me up in the morning.

Favorite color – red.
Favorite food – Mexican
Favorite holiday – Christmas
Favorite movies – anything with John Wayne and True Grit
If I could visit anywhere in the world, I would go to South Africa.
My friends and family would describe me as happy.

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

Dr. Majid Hameed

I grew up and still live in Kashmir, India – a place where a CF diagnosis is extremely uncommon. When I was younger, I was misdiagnosed a number of times with everything from asthma to tuberculosis. When I was finally correctly diagnosed with CF at the age of 22, I had already developed severe bilateral bronchiectasis.

In spite of my reoccurring illness and with the support of my family, I was able to complete my education and become a physiotherapist. I am grateful every single day to my parents for providing me with all the support possible, even though they do not completely understand my disease.

Today, I exercise regularly to stay healthy and am motivated to remain committed to my treatments and physical health by my responsibilities to my family, my wife and child, and by my passion for my career and goals. I refuse to be a mute spectator to CF.

My favorite…
Color: blue
Food: mutton biryani
Movie: Anand
Song: My Heart Will Go On by Celine Dion
Sport: Cricket
Athletes: Shahid Afridi and Imran Khan

If I could visit anywhere in the world, I would visit… Holy Mecca and America.

If I could give someone recently diagnosed advice, it would be…
No matter how many times you break down, always find the courage to get back up. Giving up is never a choice.

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.

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 17 2013

Nicki Perkins

“Get busy living or get busy dying.”

I was not diagnosed with cystic fibrosis until I was four years old – and it shocked my entire family completely because no one else had ever had the disease. I know that my parents struggled with guilt over it for a long time, but I never blamed them; cystic fibrosis is just a part of who I am.

As a child, I was never coddled; my parents insisted I play any and every sport available to me, and my medications and treatments were always nonnegotiable. I am so fortunate to have parents and family who support and encourage me to live my life as normally as possible. Because of this support, I played basketball, volleyball, track, softball, and badminton, and was more often than not captain of my team.

Cystic fibrosis has definitely made my life different than that of the average person. For example, dating was always a daunting process. When I met my husband, I had to explain my disease and all that it entails, including the probability that I will never have children. My disease has also made traveling harder than normal. I always have to be completely open with those friends and family with whom I am traveling about my medications and other treatment and exercise routines.

In spite of the difficulties, I have had many, many happy experiences. I recently started doing cross-fit six to seven days a week, and was able to do my first ever hand stand push-up, an accomplishment I never thought I would achieve! I also just found out that, after raising over $600,000 for the University of Calgary, they are naming their CF lab after me – an honor I am proud to have. By never taking a day off of my treatments and by exercising regularly, I have been able to accomplish things that I never thought possible and plan to reach even more goals in my future, like graduating from law school. Life may not be fair, but it is just as unfair for me as any other person, so I refuse to let me disease stop me from reaching my dreams.

Color… pink
Food… French fries
Holiday… Christmas
Movie…. Shawshank Redemption
Musical artist…. Jason Mraz
Sport… basketball
Athlete… Jarome Iginla

If I could visit anywhere in the world, I would travel to Asia.
If my family and friends had to describe me in one word, it would be ambitious.
My role model is my friend Diane, who is a 50-year old transplanted CF patient.
If I could give anyone recently diagnosed with CF any advice, it would simply be to play sports.

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