One night of my freshman year of high school, I was hanging out with a couple of my girl friends. We stayed up eating junk, laughing loads, and you know, doing what teenage girls do! What seemed to be a totally normal night for me quickly made a turn for the worse the next morning.
I woke up with a severe, stabbing abdominal pain that was unlike anything I had felt before. My parents rushed me into the hospital, where they quickly put me on some heavy pain killers. After various tests and lots of waiting, my doctor came in and told me, “Well my dear, you have a disease called pancreatitis.”
I remember my stomach dropping after she said that. I had never heard of pancreatitis before, but all my 14 year old mind could conclude was that it sounded very severe. I was instantly filled with worry and fear, questioning what was going to happen to me.
After receiving blood work and genetic testing, we discovered that I have hereditary chronic pancreatitis. I won’t bore you with the details of it, so long story short, I carry a recessive cystic fibrosis gene, which can present itself as pancreatitis. I also have a pancreatic divisum, which my doctors believe also contributes to my pancreatitis. While most people associate pancreatitis with excessive alcohol use, mine has very different causes. It has been a struggle trying to explain my case to people, as it isn’t a very well known disease, and those who know about it often think of an alcoholic (people even asked me when I was 14 if I was an avid alcohol drinker!)
So what is pancreatitis then? Well, when a patient has a pancreatic attack, digestive enzymes in the pancreas start digesting the organ itself, leaving permanent scar tissue to the pancreas. Every time damage like this occurs, it causes severe bouts of sharp pain to the patient. The more frequently the attacks occur, the more likely it is that the patient will suffer with ongoing pain that requires more consistent medical attention. Yup…..One. Big. OUCH.
Fast forward to today; I am about to turn 21, and am in great health. Over the last 7 years, I have been hospitalized for pancreatitis 4 times, and have had multiple MRI’s, blood tests, etc. to rule out any other underlying causes of my disease. While my experiences with pancreatitis have left me in excruciating and debilitating pain at times, I know that my case isn’t nearly as bad as some other adolescents who suffer with chronic pancreatitis, and I am extremely grateful that I have learned how to manage the symptoms and avoid the possibility of an attack. When I was diagnosed at 14, I ate like any other teenager would. However, after I started having episodes, I knew I had to start being extremely careful with my health and how I treat my body. I started eating a very clean diet, consisting mostly of whole, natural foods. Today, I can safely say that I attribute most of my recovery and maintenance to eating this way. While the disease is something I will have my whole life, I know that I can take proactive steps, such as a clean diet and very sparing alcohol use, to ensure that I don’t have episodes often, if at all.
When I discovered that the National Pancreas Foundation’s primary office is just 20 minutes from my hometown, I was ecstatic and wanted to find out any ways that I could work with or help the organization. After meeting with the executive manager, Matt Alsante, and chapter manager, Patrick Salami, we brainstormed ideas for me to bring awareness to pancreatic disease, and to bring traffic into NPF’s network to raise awareness and funds for their efforts. I decided the best way to do this was through my creative abilities as a music artist, so I created a song specifically for the NPF Color it Purple campaign titled “My Time.” The song is the theme song for the campaign, as well as the song for the social media dance challenge, which is working to spread awareness of the disease. I wanted a song with an empowering message, and the words of this song resonate deeply with me. I believe regardless of whatever struggle you may be facing, you should be living each day to the fullest. Life is so fragile and is the greatest gift, and I don’t want to spend any time worrying about what could go wrong; I want to be present and enjoy the life I’ve been given. I hope the song inspires you to do the same!
The first step to finding a cure is always through awareness and attention, and this is my intention while teaming with NPF. I am extremely hopeful that through our efforts, we can help educate people on the causes and implications of pancreatic disease, and raise funds for the necessary research. I hope you join in on this mission! To learn more, please visit pancreasfoundation.org .
And to those of you who are or have suffered with pancreatitis, my best wishes and prayers are with you always. May you always be surrounded by positivity and love. I’m with you!