My very first attack was when I was 10 years old.
I’ll never forget the impact it had on my outlook on the world as a child. I was lucky and it went into remission for a few years until I was 13. Then, it hit me hard and never subsided. I had more hospital visits than I can count, flying all over the country to just TRY and find even a bit of relief. I saw specialists in Pittsburgh, many many trips to LA, all over San Diego and finally, Minnesota.
Exactly a week after my 16th birthday, I had my TPIAT.
After 2-3 years of constant attacks, hospitalizations, and indescribable pain, I evicted that thing! This March is my 10 year anniversary and not once have I ever regretted it.
I was diagnosed in the early days, the ones where our only way to find others suffering the same conditions were Facebook groups. Had I not joined, we wouldn’t have even known about the TPIAT procedure.
My recovery was certainly not an easy one, 17 hours in the OR, 2 months inpatient, and 4 months living in another state. But, It’s given me an appreciation for the life I have.
I’m not constantly in the ER anymore, and I’m not nearly as isolated. Finding others my age has been particularly crucial to my mental health. Finding others we can relate to in ways that we could never really describe to a “normal” person, makes the utmost difference, especially for pediatrics. A child should never feel that rejection.
It’s made me so proud of this community, banding together, building a support system for us, our parents, loved ones and making it possible for more research we’ve desperately needed.
I still learn more and more about type 3C diabetes, management, and progression, I’m incredibly impressed by the technology that’s developed though, helping so many of us take close care of those little islet cells. With the right resources, our future is a bright one. We have each other now and I truly hope with all my heart, one day, a transplant won’t be needed.
What Do You Wish People Knew About Pancreatitis?
I wish people knew this is a condition that can be brought on by many things, not just heavy alcoholism and addiction. There’s an intense, deep rooted stigma towards patients presenting with CP, even in children. We just want relief, writhing in pain and throwing up while having to advocate for yourself is truly exhausting.
Growing up, and even now, having chronic illness and chronic pain, I’ve had many people take my isolation and/or inability to keep up socially personally, when it was never about them. I wish people understood that, maybe it wouldn’t be so lonely to be young and sick.
What Advice Would You Give to Fellow Pancreatitis Patients?
Fellow patients and caregivers, give yourself some grace!
Self criticism will only hurt in the long run. Remember how special you are, this life and this illness takes so much from us, but you’ve gained an insight into the world and other people that almost no one has.
I cannot begin to describe how important it is to find other people you can relate to, whether that’s other parents or other patients. It’s something that’s helped validate so many experiences that I once questioned. Keep fighting. Keep advocating for yourself or your loved one, especially since we often lose the ability to continually do it for ourselves, while we’re already fighting an internal battle. We’re here for each other, and, no matter how hard it can be, you’re not alone.
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Your story matters. If you’re living with pancreatitis or caring for someone who is, your experience can inspire and empower others who are going through the same thing. That’s why we want to hear from you! Share your story with us by clicking the button below.
About Mission: Cure
At Mission: Cure, we are dedicated to finding effective treatments and, ultimately, a cure for pancreatitis. Through patient education, research, and advocacy, we strive to improve the lives of those affected by this condition.
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