Attending the Pancreas Academy provided by CAPER and the PancreasFest has given me a renewed sense hope and encouragement in regards to the research into pancreatic diseases and the treatments and potential cures for the diseases. I have to admit I had feelings of trepidation before arriving in Pittsburgh. I was concerned how a parent, a caregiver, would be viewed and/or accepted by the physicians and scientists attending the conference. Upon arrival and meeting with the NPF staff, other volunteers and physicians attending the conference, all my feelings of concern dissipated. Everyone was welcoming; the physicians were not intimidating, but instead had a sincere interest in patients suffering from these depilating diseases. Meeting fellow volunteers and the staff of the National Pancreas Foundation has shown me that those suffering from pancreatic diseases are not alone. Pancreatic patients, survivors and care givers all come together to push for education and research towards diagnoses and treatment.
The Pancreas Academy provided an excellent instruction on the pancreas and pancreatic diseases. Most of the speakers recognized the individualized aspects of the disease. Two of the physicians with whom I was most impressed were Dr. Anna Evans Phillips, who spoke about chronic pancreatitis, and Dr. Andres Gelrud, who focused on pancreatic enzyme replacement therapy. Their talks illuminated the individualized nature of the disease and the need to find the most appropriate treatment for each individual. The physicians recognized that each person who has suffered from pancreatitis has a different etiology, or cause, of the disease. As a result, treatments and outcomes are different from each person.
The afternoon was highlighted by presentations by some of the most esteemed physicians in the field – Dr. Mel Wilcox, Dr. Kenneth Lee, Dr. Vikesh Singh and Dr. David Whitcomb. These physicians discussed the present state of treatment of pancreatic diseases as well as the potential for future treatments. Dr. Whitcomb’s presentation on precision medicine breathed hope for the treatment and cure of pancreatic diseases. The recognition of genetic mutations as a cause of a patient’s pancreatitis is a major step in finding the appropriate treatment. As Dr. Whitcomb was speaking about certain genetic mutations, I thought about Cameron (my son) and the genetic mutations he carries. Cameron’s chronic pancreatitis progressed to the need for a total pancreatectomy with auto islet transplant. Hopefully, in the future, with the new diagnostic tools and treatments, someone like Cameron can be diagnosed and treated before the disease progresses.
Attending the PancreasFest gave me the opportunity to meet and hear physicians from around the world who treat pancreatic diseases. There were physicians from China, Germany, England and Australia. Many are also involved in scientific research concerning the diagnoses and treatment of pancreatic diseases. One of the sessions focused on the interplay between the CFTR genes and the pancreas, including the use of CFTR medications for the treatment of pancreatitis.
The Abstract and Poster session provided an excellent opportunity to see the research conducted in the field by younger physicians. Research topics included post ERCP pancreatitis, amylase deficiencies in children, total pancreatectomy with auto islet transplant, diagnosis of acute and chronic pancreatitis and pancreatic enzyme replacement therapy.
The session on the National Pancreas Foundation Centers of Excellence was especially informative in light of the work being done in conjunction with Ariel Precision Medicine and Mission: Cure. Precision medicine appears to be the future treatment for those suffering from pancreatic diseases.
I am very thankful for the opportunity to have attended the Pancreas Academy and PancreasFest. I was pleasantly surprised by the approachability of the physicians and scientists who attended the conference. They were sincerely interested in speaking with patients and caregivers and learning their stories. They seemed to truly care about the struggles endured as a result of these diseases and desire to provide hope for the future in the diagnoses and treatments of their patients.
I am also very thankful for the opportunity to become part of the NPF “family.” I recently became the chairperson for the Louisiana chapter. The PancreasFest was my first formal introduction to the NPF and its staff. Everyone I met with the NPF has been very accepting, kind and giving. Everyone is sincere in their desire to provide hope and courage to the patients and caregivers. We all had different stories, but we are all committed to advocating for continued research into the diagnoses, treatments and potential cures for the pancreatic diseases, as well as encouraging education to the medical and general communities and providing support to those suffering from pancreatic disease. On a personal note, I have to say that if someone had told me twelve years ago when Cameron was first diagnosed with hereditary pancreas that I would have the opportunity to meet one of the physicians who discovered the first genetic mutations, I would have said that would not be possible. However, this past week, I did have the opportunity to meet and speak with him. I was able to thank him for his contributions to the research on pancreatic diseases.