John Stallings Needs Your Help for Diabetes Insipidus Care

Hi there! My name is John Stallings, and I was recently diagnosed with a rare disease that only affects 0.004% of the population. This disease is currently called central diabetes insipidus, but it is being rebranded to Arginine Vasopressin Deficiency, or AVP-D.

This is a hormonal issue where, due to a pituitary tumor, I am unable to produce the hormone vasopressin. Vasopressin is what regulates salt and water in the body, working with your kidneys and brain to ensure an equal balance. I’ve been hospitalized 4 times, including a 3-day stay in the ICU where I had multiple seizures.

The good news is that I know what it is now and have a great team treating it. The bad news is that I need daily bloodwork to make sure my sodium levels don’t plummet. There is currently no way to test sodium at home affordably. I have been working with the Raymond A. Wood Foundation to see about obtaining a medical-grade device so I can give my arms a break (see the second photo, that was only from 3 days of bloodwork).

Unfortunately, the cheapest option right now is $16,000 and not covered by insurance. I am asking friends and family to help raise the money for my monitor. Any additional funds would go straight to the Raymond A. Wood Foundation, who are doing phenomenal work with people who have brain tumors and subsequent rare disorders, like myself.

Thank you very much!