Hello, and welcome to the 5th annual Pipeline to a Cure!
Thank you so much for participating in this event that is so important to those of us with cystic fibrosis. I spoke here for the first time last year, and am so excited to speak to you again tonight.
But, before I start, I would like to take a moment to remember my dear friend Emily Haager, who was such an inspiration to me, as I know she was to many of you. This event is dedicated in her memory, and I know she is here tonight in spirit. Emily, I love you and miss you.
To most of you, I probably seem like a typical Southern California teenage girl. I love hanging out with my friends, I love to frustrate my parents, my favorite place is the beach, and my biggest passion is surfing. Earlier this evening, I put on a pair of cute wedge heels and my favorite maxi dress. I messed with my hair and makeup for a while, trying to make it as perfect as possible (how did I do??). And, of course, I updated my Facebook status on the way out the door. Yes, to most people, I’m Carly, the average 17-year-old southern California girl. But those who know me well know that on August 3rd, 1995, I was diagnosed with cystic fibrosis. On that day, only 3 months after my birth, my life changed forever.
Cystic fibrosis is a genetic disease that causes excessive, thick mucus to accumulate throughout my body, more specifically, my lungs, stomach, sinuses and pancreas. Not only does this mucus clog my organs and hinder their functioning, but it creates perfect conditions for bacteria to grow. The growth of this bacteria means that I always have an infection in my lungs. Cystic fibrosis primarily makes it more difficult for me to breathe on a daily basis. But, the disease impacts me in so many other ways. Because of CF, I take handfuls of pills every day that help my stomach and intestines function properly. I also dedicate over an hour, at least twice a day, to breathing treatments that allow my lungs to break down and expel the mucus clogging it. I must take insulin shots with every meal because my pancreas no longer functions properly, causing me to have CF related diabetes. And, I have chronic sinus infections from the passages being blocked and infected with bacteria, so I need to have sinus surgery every few years.
To me, the most daunting part of having cystic fibrosis is knowing that, at the end of each day, when I have finally completed my hours of treatments and taken my dozens of medications, I go to sleep knowing that I will be doing the same thing the next day. And the next day. And the entire week, month, and year after that. Cystic fibrosis is relentless. It does not go away, and it does not allow breaks.
But sometimes, a break is all I need. Sometimes, all I want to do is live like a normal teenager. Sometimes, the desire to live my life outweighs my willingness to fight for my life. One of these times was last winter. I was tired and frustrated. The pressure of school and my CF care routine was getting the better of me. I wanted a break – I needed a break from my daily routine of hours of treatments and dozens of pills. I started slacking off on my treatments and medications, not suddenly, but gradually. I lowered my own standards every single time I missed a breathing treatment or skipped a medication. I grew accustomed to my body getting sicker, a little bit at a time. But, a few days into winter break, reality hit me like a semi-truck. At my quarterly CF doctor’s appointment, we learned that my lung function had dropped drastically. The damage I had done to myself was scary, and I was forced to face the consequences of my mistakes by spending the next 2 -1/2 weeks in the hospital. While my peers spent the holidays with their friends and family at home, I spent my entire holiday season fighting an infection that my lack of compliance had caused.
While I certainly learned my lesson, it is still very difficult to strictly adhere to a regimen of care that requires hours a day, every day. Probably the most difficult part is knowing that all this effort is merely to slow the rate of the inevitable decline of my lung function – my ability to breathe. Don’t get me wrong – I am very grateful for the medications and treatments that are enabling me to live a longer, and better life. But my dream, and the dream of every person with cystic fibrosis, is to one day have a cure. And, while I am dreaming, wouldn’t it be great if that cure was in the form of a pill? A simple pill that would correct this incredibly complex genetic disease and allow me to live a normal, healthy life. While this has been my dream every day of my life, deep down I really didn’t think it could ever actually come true.
That is, until now. Because, that dream has come true for a small group of people with CF. For the first time, there is a drug – a simple pill – that corrects the basic defect that causes cystic fibrosis for about 4% of the CF population. As Judy mentioned earlier, this drug is called Kalydeco. For that very small group of us, Kalydeco has turned the dream of a healthy life into the reality of a healthy life. While I don’t have the mutation that benefits from Kalydeco, I have two very close friends, brother and sister, who do and are currently taking the medication. For them, the impact of this medication was immediate and dramatic. Within months, their weight increased, bringing them from underweight to normal weight. They stopped having sinus headaches. And, best of all, their lung function soared. I am so happy and excited for my two friends who can now breathe deeply and live fully. When I see how amazing they are doing, a wave of hope comes over me. Because, for me, knowing how this medication has changed their lives - just knowing that it is possible, changes everything. It allows me to dream -what if that was me?
What if some day, I’ll be able to just wake up, eat breakfast, brush my teeth, and leave for school, without doing my breathing treatments?
What if some day, I won’t worry about when my lung function is going to decline during the school year? I won’t have to make up weeks worth of schoolwork that I missed from being in the hospital.
What if some day my stomach will cease to ache, my sinuses will be clear and pain-free, my pancreas will function and my skin will forget what it feels like to take 6 insulin shots every day?
What if some day I can take a full, deep, effortless breath - and then another…and another?
I’m not sure when that “some day” will come. But I do know that it will come sooner because of the kindness and generosity of people like you. So, I thank you from the bottom of my heart for your support. You now know that it is truly making a difference. I hope you now understand how much it means to those of us with cystic fibrosis.
It is such a thrill and honor for me to be up here speaking to you tonight. I have been looking forward to this all year and am so excited to be here.
And when this evening is over, and I go back home, I will flip off my wedge heels, take off my favorite maxi dress and remove my makeup. Then I will take my pills and start my breathing treatments. But, tonight I will do it with a smile on my face and gratitude in my heart. Because I will be thinking about all of you, and how you took the time out of your lives to be here tonight, to listen to my story, and to help me breathe easier and live longer.
Thank you so much!
Thank you so much for participating in this event that is so important to those of us with cystic fibrosis. I spoke here for the first time last year, and am so excited to speak to you again tonight.
But, before I start, I would like to take a moment to remember my dear friend Emily Haager, who was such an inspiration to me, as I know she was to many of you. This event is dedicated in her memory, and I know she is here tonight in spirit. Emily, I love you and miss you.
To most of you, I probably seem like a typical Southern California teenage girl. I love hanging out with my friends, I love to frustrate my parents, my favorite place is the beach, and my biggest passion is surfing. Earlier this evening, I put on a pair of cute wedge heels and my favorite maxi dress. I messed with my hair and makeup for a while, trying to make it as perfect as possible (how did I do??). And, of course, I updated my Facebook status on the way out the door. Yes, to most people, I’m Carly, the average 17-year-old southern California girl. But those who know me well know that on August 3rd, 1995, I was diagnosed with cystic fibrosis. On that day, only 3 months after my birth, my life changed forever.
Cystic fibrosis is a genetic disease that causes excessive, thick mucus to accumulate throughout my body, more specifically, my lungs, stomach, sinuses and pancreas. Not only does this mucus clog my organs and hinder their functioning, but it creates perfect conditions for bacteria to grow. The growth of this bacteria means that I always have an infection in my lungs. Cystic fibrosis primarily makes it more difficult for me to breathe on a daily basis. But, the disease impacts me in so many other ways. Because of CF, I take handfuls of pills every day that help my stomach and intestines function properly. I also dedicate over an hour, at least twice a day, to breathing treatments that allow my lungs to break down and expel the mucus clogging it. I must take insulin shots with every meal because my pancreas no longer functions properly, causing me to have CF related diabetes. And, I have chronic sinus infections from the passages being blocked and infected with bacteria, so I need to have sinus surgery every few years.
To me, the most daunting part of having cystic fibrosis is knowing that, at the end of each day, when I have finally completed my hours of treatments and taken my dozens of medications, I go to sleep knowing that I will be doing the same thing the next day. And the next day. And the entire week, month, and year after that. Cystic fibrosis is relentless. It does not go away, and it does not allow breaks.
But sometimes, a break is all I need. Sometimes, all I want to do is live like a normal teenager. Sometimes, the desire to live my life outweighs my willingness to fight for my life. One of these times was last winter. I was tired and frustrated. The pressure of school and my CF care routine was getting the better of me. I wanted a break – I needed a break from my daily routine of hours of treatments and dozens of pills. I started slacking off on my treatments and medications, not suddenly, but gradually. I lowered my own standards every single time I missed a breathing treatment or skipped a medication. I grew accustomed to my body getting sicker, a little bit at a time. But, a few days into winter break, reality hit me like a semi-truck. At my quarterly CF doctor’s appointment, we learned that my lung function had dropped drastically. The damage I had done to myself was scary, and I was forced to face the consequences of my mistakes by spending the next 2 -1/2 weeks in the hospital. While my peers spent the holidays with their friends and family at home, I spent my entire holiday season fighting an infection that my lack of compliance had caused.
While I certainly learned my lesson, it is still very difficult to strictly adhere to a regimen of care that requires hours a day, every day. Probably the most difficult part is knowing that all this effort is merely to slow the rate of the inevitable decline of my lung function – my ability to breathe. Don’t get me wrong – I am very grateful for the medications and treatments that are enabling me to live a longer, and better life. But my dream, and the dream of every person with cystic fibrosis, is to one day have a cure. And, while I am dreaming, wouldn’t it be great if that cure was in the form of a pill? A simple pill that would correct this incredibly complex genetic disease and allow me to live a normal, healthy life. While this has been my dream every day of my life, deep down I really didn’t think it could ever actually come true.
That is, until now. Because, that dream has come true for a small group of people with CF. For the first time, there is a drug – a simple pill – that corrects the basic defect that causes cystic fibrosis for about 4% of the CF population. As Judy mentioned earlier, this drug is called Kalydeco. For that very small group of us, Kalydeco has turned the dream of a healthy life into the reality of a healthy life. While I don’t have the mutation that benefits from Kalydeco, I have two very close friends, brother and sister, who do and are currently taking the medication. For them, the impact of this medication was immediate and dramatic. Within months, their weight increased, bringing them from underweight to normal weight. They stopped having sinus headaches. And, best of all, their lung function soared. I am so happy and excited for my two friends who can now breathe deeply and live fully. When I see how amazing they are doing, a wave of hope comes over me. Because, for me, knowing how this medication has changed their lives - just knowing that it is possible, changes everything. It allows me to dream -what if that was me?
What if some day, I’ll be able to just wake up, eat breakfast, brush my teeth, and leave for school, without doing my breathing treatments?
What if some day, I won’t worry about when my lung function is going to decline during the school year? I won’t have to make up weeks worth of schoolwork that I missed from being in the hospital.
What if some day my stomach will cease to ache, my sinuses will be clear and pain-free, my pancreas will function and my skin will forget what it feels like to take 6 insulin shots every day?
What if some day I can take a full, deep, effortless breath - and then another…and another?
I’m not sure when that “some day” will come. But I do know that it will come sooner because of the kindness and generosity of people like you. So, I thank you from the bottom of my heart for your support. You now know that it is truly making a difference. I hope you now understand how much it means to those of us with cystic fibrosis.
It is such a thrill and honor for me to be up here speaking to you tonight. I have been looking forward to this all year and am so excited to be here.
And when this evening is over, and I go back home, I will flip off my wedge heels, take off my favorite maxi dress and remove my makeup. Then I will take my pills and start my breathing treatments. But, tonight I will do it with a smile on my face and gratitude in my heart. Because I will be thinking about all of you, and how you took the time out of your lives to be here tonight, to listen to my story, and to help me breathe easier and live longer.
Thank you so much!
