Johanna CF patient Mom
My daughter's pancreas produces enough enzymes but apparently sometimes (not predictable) the pancreas produces enzymes in a too thick mucus that can’t pass to the bladder therefore it stays in the pancreas, digesting the pancreas.
Her experience living with CF
This causes her recurrent pancreatitis. Now she is taking enzyme supplements so the pancreas can rest and therefore we reduce the probability of having another pancreatic episode. That approach has seemed to work well.
Her mutation is so rare that there is very little research on this type of CF. It’s been only one year since her diagnosis and we are still learning how to treat her type of CF, which includes a very low fat (as opposed to the most common CF patients) and irritants-free diet.
Have you taken our Cystic Fibrosis In America Survey yet?