Sometimes a fork in the road leads us right to where we belong. In my CF story, my fork in the road was deciding whether to take charge of my health. Do I get involved or do I ignore it?
For most of my childhood, I didn't get the care that I needed. At 3 months old, I was diagnosed with failure to thrive and then diagnosed with CF after two sweat tests -- the second confirming the diagnosis. My parents, however, denied my sweat test results since the first one was negative. They didn't think the doctors knew what they were talking about. So for most of my life I was only treated with pancreatic enzymes to help me gain weight.
Up until high school, my family sheltered me from sports and most events outside of family activities. In part, this was because my family thought that since I had trouble breathing, I shouldn't be active. Then in high school, I had 10 gallstones that caused a gallbladder attack and then removal of my gallbladder and finding out that I have cirrhosis of the liver. After graduating, I wanted independence. That led me to move out of the house, get engaged, marry young, and then divorce by the age of 21. But I realized I was having trouble keeping up with my friends; I was always coughing and people thought I was sick.
So I decided that at 22 years old, and 87 pounds, it was time to take charge of my life and my health.
I then started my research on what having cystic fibrosis really meant for me. I learned I needed to get involved in my own care. I called adult CF clinics nearby and within days, I had an appointment with Northwestern Memorial Hospital in Chicago. By getting the proper care and taking the right medications, I found myself with more energy and finally gaining weight. I felt healthier. Before I knew it, it was 11 years later. I've held jobs in retail, from seasonal to full-time management positions. I started Orkambi two years ago and it changed my life. I am no longer 87 pounds and I not only feel healthier, but I have become an active advocate for myself and others with CF and other rare diseases.
I took another step and participated in my local Great Strides walk six years ago and then got more involved with CF through writing and conferences. Having these experiences made me realize I was not alone, that every story is different and I want to help others.
As I learned more and more about myself, I found a true passion for advocating for my health. I've been able to do this since I got involved with Community Voice. Community Voice is a group that provides opportunities to get involved with and influence programs for the CF community by completing surveys, participating in focus groups, and joining working groups.
Community Voice has given me an opportunity to share my story and make my opinions feel important.
By joining Community Voice, I was able to get involved in planning projects such as the Patient and Family Registry Advisory Board, Insight CF, CF MiniCon: Young Adult, and BreatheCon. Community Voice made me feel my ideas were important, and it's been great to meet and work with so many amazing people connected to CF on these efforts.
Being a member of Community Voice has encouraged me to get involved in other projects to benefit people with CF -- and beyond. In the last year, I was appointed by the governor of Illinois to the Rare Disease Commission. As a member, I help leaders in Illinois see that rare disease patients need to be heard. Community Voice helped me open up about my story and taught me how to speak up. I learned that I am meant to raise awareness and help others gain the courage to do so as well. Because if we don't speak out, who will?
Like I said, sometimes a fork in the road leads us right where we belong. Making the decision to get involved in my health and the well-being of others with CF has given me opportunities beyond what I had imagined possible. I'm happy I chose -- and continue to choose -- to make my voice heard.
If you want to join Maria in making your voice heard, join Community Voice.