Aaron Bowman of The Dalles has suffered with life-threatening pancreatitis attacks and/or severe abdominal pain since the age of four. Doctors told him he needed to exercise more and maintain better eating habits, but they never got to the bottom of his constant stomach pain. Aaron’s wife Katy couldn’t watch her husband continue to suffer and she pushed for them to keep going to doctors and specialists to find out the cause of his daily discomfort. At the age of 39 Aaron was finally diagnosed with an ultra-rare disease that explained his symptoms.
Aaron is living with a rare genetic disease called familial chylomicronemia syndrome (FCS) that makes it difficult for the body to break down fat. The only way to manage symptoms is to adopt a strict diet of less than 10-20 grams of fat a day, the equivalent of 1/3 of an avocado. Aaron adheres to this diet and still struggles with stomach pain and pancreatic attacks that can be fatal and have put him in the hospital. A drug called WAYLIVRA is the first and only treatment option in development for the disease, but recently the FDA rejected its approval. Aaron is urging the FDA to reconsider its decision to reject the treatment, while also working to inform others of the disease to prevent future misdiagnoses.
To hear our interview with Aaron Bowman, click on the podcast bar below