Loving Someone with a Rare Disease

In 2018, my wife felt a migraine come on. She had been having them more recently, managing them with Advil, and rest. The Advil became less effective, and the migraines lasted longer and longer, until they were basically just one continuous experience.  

Over the next several years, she would see doctor after doctor, specialist after specialist. In after a few years of trials and error, new doctor after new doctor, we made our way to Jefferson’s Neurosurgery department for an MRI, where it was discovered my wife’s pituitary gland was significantly inflamed and upsetting her optic nerve.  

Bloodwork confirmed that it was also impacting appropriate production and secretion of many vital hormones. Next came the biopsy, which confirmed no tumors, but also confirmed the cause was unknown.  

Since this discovery in 2020, my wife’s team has expanded at Jefferson to include an endocrinologist who manages her care and medication. 

While she has answers, the biggest challenge for us has been that she doesn’t have a true diagnosis and is a patient population of 1 with no support groups, and no terms to investigate on Dr. Google.  

Her condition is managed well now, and while she still is on several medications, her migraines have stopped, and her hormone levels are improving. We hope that things continue to trend in the right direction and reduce medication and enter remission soon.  

My wife is my biggest hero for handling this year’s long struggle with patience and positivity, even when things really sucked.   

Written by an anonymous Calciumite