Pancreatitis Patient Experience

What is the typical journey of an individual living with pancreatitis as they navigate the medical system in search of a diagnosis and a care plan? Over the course of 35+ interviews, we were able to map out the following journey.

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Pancreatitis Patient Experience
Report: Designing for Hope & Resilience

Current Patient Experience

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An individual experiences intense excruciating abdominal pain.
An individual experiences intense excruciating abdominal pain.
They go to the ER; get some pain relief; may undergo some diagnostic tests; likely discharged with no clear diagnosis and/or referral to a GI.
They go to the ER; get some pain relief; may undergo some diagnostic tests; likely discharged with no clear diagnosis and/or referral to a GI.
They may make multiple visits to the gastroenterologist and or other clinicians and undergo another set of scans and tests.
They may make multiple visits to the gastroenterologist and or other clinicians and undergo another set of scans and tests.
The person may end up making multiple visits to different GIs, urgent care and emergency departments, many times with no clear diagnosis or even a misdiagnosis.
The person may end up making multiple visits to different GIs, urgent care and emergency departments, many times with no clear diagnosis or even a misdiagnosis.
The person is left in a state of confusion, hopelessness and anxiety while still managing pain.
The person is left in a state of confusion, hopelessness and anxiety while still managing pain.
Some individuals who have the resources may traverse the country, seeking experts to diagnose their condition and/or create a plan to manage pancreatitis.
Some individuals who have the resources may traverse the country, seeking experts to diagnose their condition and/or create a plan to manage pancreatitis.
Armed with a diagnosis, the person may seek care from a trusted GI and pancreas expert.
Armed with a diagnosis, the person may seek care from a trusted GI and pancreas expert.
They may also seek help from other specialists to manage related complications. But in most cases, the burden remains with the patient (and/or the caregiver) to coordinate between different clinicians while carrying the burden of pancreatitis.
They may also seek help from other specialists to manage related complications. But in most cases, the burden remains with the patient (and/or the caregiver) to coordinate between different clinicians while carrying the burden of pancreatitis.
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Pancreatitis Patient Quotes

Pancreatitis patients face numerous barriers in accessing care. The following quotes are from pancreatitis patients, which bring their experiences to life.

You feel alone as a patient. I want to develop a plan. If you have a plan, you have hope.

Peter Fraser, Pancreatitis Patient

My doctor told me that I was exaggerating the pain because I am a woman.

Sarah Walker, Pancreatitis Patient

I just want him to have the good quality life that he deserves, especially after all that he has suffered.

Emilia Hubert, Pancreatitis Patient Caregiver

I am tired of carrying my medical records just to prove that I am not an alcoholic who is a drug addict, especially with kids in tow.

Sarah Walker, Pancreatitis Patient

You can drown if you do not have support or doctors who listen to your emotions.

Annabelle Ruiz, Pancreatitis Patient

If I could take his pain, I would in a heartbeat... but what I can do is advocate for him.

Emilia Hubert, Pancreatitis Patient Caregiver
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