Today is Rare Disease Day. After considering a half dozen
diseases or conditions Thomas has to manage, I will take today to highlight
CHRONIC PANCREATITIS.
Thomas was diagnosed with Chronic Pancreatitis (CP) in January 2023 after six months of symptoms and lab results culminating with a confirming MRI result. Our family is still learning much about this rare disease. Facts:
(1) Chronic Pancreatitis is different than Acute Pancreatitis: symptoms are different, treatment is different. If you search online for "pancreatitis," you are generally going to find info on Acute Pancreatitis.
(2) Doctors commonly know about Acute Pancreatitis. Very few doctors expertly know how to manage Chronic Pancreatitis. There is much misinformation out there! At Levine's suggestion, Thomas will almost certainly be traveling to one of the top hospitals in the country (world) specializing in chronic pancreatitis: either Boston Children's or Cincinatti Children's. In the meantime, I have spent many hours over the last two months learning about this condition by reading studies written by the handful of national experts and listening to numerous educational webinars published by Mission: Cure.
(3) Did you know that the pancreas is absolutely critical to
digesting food? Only 5% of the organ's cells are devoted to making insulin to
process sugar, while 95% are devoted to digesting fat, protein, and
carbohydrates. When one's pancreas slowly stops working, what follows are awful
(sometimes crippling) gastrointestinal symptoms and very bad malnutrition.
(4) Thomas now needs high doses of pancreatic enzymes in order to digest the food he is eating. Truly efficacious pancreatic enzymes are by prescription only--not the digestive aids you see at the grocery store! Dosing is challenging and should be based on the fat content of the food Thomas is eating. This means that somebody has to be responsible to calculate the fat content of the food and do the math to know how many enzymes he should take--which means it's not easy for him to be apart from Mama these days. Enzymes should be broken up over the course of the meal, with new enzymes being taken about every 10 minutes. Taking Pancreatic Enzyme Replacement Therapy is vitally important, but patient compliance is statistically low because taking the meds is a hassle and makes one feel socially isolated.
(5) Why is Thomas suffering Chronic Pancreatitis on top of everything else? When numerous of his organs died 26 months ago, his pancreas suffered a serious ischemic injury--which means it *almost* died. His pancreas has never fully recovered and, in fact, has begun to atrophy.
It is hard to
convey our parental feelings about learning that Thomas is facing Yet One More
Thing he will have to manage for his lifetime.
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