I was diagnosed with cystic fibrosis when I was 32, and it has been quite a journey to get to where I am today. Regardless of the difficult path leading to my diagnosis, I have met some amazing people along the way who have encouraged me to fight against this disease and who have shown me just how strong I am.
My parents gave me a childhood filled with friends, family, love, and fun. But along with those happy memories, I also have memories of constant GI issues, abdominal pain, bronchitis, pneumonia, and other complications.
As I got older, my symptoms continued to worsen. I developed frequent bouts of pancreatitis when I was 22 years old, which baffled my doctors. I was tested for just about everything, but my GI doctor never gave up on me or thought I was cuckoo when I came to him describing my symptoms. He referred me to another specialist who initially suggested that I receive genetic testing for cystic fibrosis. But he later told me not to follow through with it because he was afraid having the test in my medical records could endanger my health insurance eligibility in the future. It is extremely difficult knowing that if I had gotten tested then, I could have begun my CF journey much earlier. But I remained undiagnosed through my late 20s and struggled with years of brief, but manageable chronic pancreatitis flare-ups and abdominal surgeries.
By my early 30s, I only got sicker and my symptoms worsened. My GI doctor admitted me to the hospital again for pancreatitis, determined to figure out the underlying cause of my years of pain. After the first week in the hospital, he ordered a genetic pancreatitis panel -- the same test that I was told not take 10 years prior, and I anxiously awaited the results.
I received the results of the genetic testing in his office and finally had the resolution I so desperately wanted -- I was officially diagnosed with CF.
Something interesting happens when you finally get a diagnosis after being misdiagnosed your entire life. There's a swirling of emotions inside of you. You want to cry and rejoice at the same time. You feel devastated, but vindicated.
These feelings, of course, are immediately followed by periods of crying and depression. I'll be honest with you, I still get emotional talking about it. Then, something snapped. I became angry and felt determined to fight back against this disease that had taken so much away from me.
A few weeks after my diagnosis, I was contacted by the Atlanta Chapter of the CF Foundation. They showed me the drug development pipeline and explained the mission of the Foundation and their dedication to funding research, providing care, and supporting those with CF and their families. I had never heard of a foundation for any other disease that was doing so much innovative research for a cure. They talked about Great Strides and other fundraising activities that happen throughout the year. I remember thinking, “If you say jump, I'll say how high!” I finally had hope and felt like I had found my way to fight back against this disease.
Since my initial meeting with the Atlanta Chapter, I have tried to get involved in as many Foundation events as I can. My Great Strides team, Autumn's Amblers, has been going strong since the first year I was diagnosed, and this year I am proud to be one of the 2019 CF Fighters for Great Strides. I have even had the privilege of speaking at local fundraisers including Great Strides, Shamrockin' for a Cure, and Cars & 'Q for the Cause.
The Cystic Fibrosis Foundation has grown very near and dear to my heart. I tell everyone about how getting involved with the Foundation has helped me and encourage others to do the same. With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
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