An individual experiences intense excruciating abdominal pain.
S/he goes to the ER; gets some pain relief; may undergo some diagnostic tests; likely discharged with no clear diagnosis and/or referral to a GI.
S/he 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 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.
Armed with a diagnosis, the person may seek care from a trusted GI and pancreas expert.
S/he 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.
The Patient Experience, Brought to Life
Pancreatitis patients face numerous barriers in accessing care.
You feel alone as a patient. I want to develop a plan. If you have a plan, you have hope.
Peter Fraser, Pancreatitis Patient
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
My doctor told me that I was exaggerating the pain because I am a woman.
Sarah Walker, Pancreatitis Patient
You can drown if you do not have support or doctors who listen to your emotions
Annabelle Ruiz, 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
If I could take his pain, I would in a heartbeat… but what I can do is advocate for him.