Why I created a t-shirt to celebrate AVP-D “culture” and support RAWF’s blood sodium meter project
My name is Dan Klingessrow and I live just outside D.C. in Mount Rainier, Maryland with my son Jonah and wife Tess. I was first diagnosed with AVP-D (also known as Diabetes Insipidus) in 2015 following surgery to remove a cyst on my pituitary gland.
Living with DI can be challenging, exhausting, and isolating. I’ve been hospitalized three times for extremely low sodium, each time while traveling overseas. If I don’t dose correctly, my day can be clouded by fatigue, brain fog, and constant trips to the bathroom. When symptoms really hit, all I can think about is drinking the coldest water I can find.
My journey with AVP-D changed dramatically in 2023 when I found the Got AVP-D / DI? Facebook group and subsequently the Raymond A. Wood Foundation. After over 8 years of managing my illness while never having met another patient, I found a community of 6,000 people experiencing the same things as I was. And a nonprofit dedicated to helping patients with DI and their caregivers. Scrolling through message after message on facebook, I felt like an alien who had finally found my home planet.
I was inspired to create the Breakthrough t-shirt because AVP-D — for better or for worse — is such a huge part of my life. If I was going to think about my symptoms every day, I wanted to channel that energy into something I was excited about. For people like me who have DI and still have a thirst mechanism intact, we crave ice cold beverages. The design features some patients’ favorite drinks, as collected on the Got AVP-D? facebook group. Breakthrough is meant to celebrate AVP-D “culture” and to encourage friends and family to ask questions so DI patients have a chance to share what it’s like living with this illness. The name comes from the medical idea of breakthrough, which for DI patients means letting their symptoms return before taking the next dose in order to ensure we aren’t overmedicating. Check out the designs and buy a shirt here.
I’m so excited that 100% of the proceeds from these shirts will be supporting the Raymond A. Wood Foundation and their efforts to develop an affordable in-home blood sodium meter. Having a device like this would change my life and the lives of thousands of patients and caregivers who are totally in the dark when it comes to dosing their DI medicine. For me, traveling is always a major stress as my body reacts unpredictably to changes in sleep, diet, and climate. In fact, I spent the last day of my honeymoon in a hospital in Athens recovering from low sodium. Being able to bring a blood sodium meter with me while I travel would allow me to adjust my dosage based on my levels in real time, and would help me stay out of the hospital.
Living with DI can sometimes make you feel really lonely. When symptoms hit between doses, it can be all you can think about. My wife Tess has patiently listened to me talk for hours on end about my brain fog, trips to the bathroom, and insatiable thirst. Being in community with the Raymond A. Wood Foundation and the Got AVP-D? facebook group has made the experience less lonely, and I hope this shirt design will do the same.
You can read more about Raymond A. Wood Foundation’s blood sodium meter project here the and buy a Breakthrough t-shirt or sweatshirt here.
In community,
Dan Klingessrow
