Just because it’s rare, doesn’t mean it’s not there.

The story of Emily

My name is Emily and I’m 20 years old. Growing up, I was a healthy, happy, active and social kid. Just before my 16th birthday, things weren’t quite right. I began having a lot of GI distress, and didn’t think much of it at first but it was persistent and only getting worse. Eventually it was time to seek the care and opinion of a specialist. Since then, I have since seen MANY GI doctors among several other specialists. I’ve also had countless endoscopies and colonoscopies. Early on, much of my testing was considered “inconclusive” other than non specific gastritis, at times quite severe, but never enough to be taken seriously. I was brushed off by many professionals from world renowned hospitals as simply being an anxious teenager with ibs. After years of no answers and continuing to get sicker, including not being able to hold down any food or water, my PCP decided enough was enough. She sent out my whole case to a private company that takes specialists and has them weave through every detail of your medical history, including biopsies. This ended up being the biggest blessing for me. After reviewing all of my biopsies from previous endoscopies, a very rare diagnosis was found that would explain why I was so ill, and it was there the entire time. Collagenous gastritis is an extremely rare inflammatory condition of the stomach causing deposits of collagen that then lead to inflammation and scarring. In my case, this scarring and inflammation going untreated for so long led to paralysis of the stomach known as gastroparesis, leaving me with a feeding tube and a picc line for TPN, also known as venous nutrition. I was also then found to have several other underlying conditions. This diagnosis is far from a “slam dunk” or “textbook” diagnosis, but if doctors were more cognizant of rare diseases, maybe I, along with so many others, wouldn’t have to suffer so long and be made to look crazy for feeling like something is just not right. Just because this disease is rare, doesn’t mean it isn’t there and has not completely altered my life. Treatment for this condition is lacking, mostly due to its rarity. My hope is that the more people that know about this condition, the better the outcome and the more diagnoses’ can be made and in turn save so many from going through what I did.