Dan H.

Dan is from Baltimore, MD. Who is living in Florida and served in the US NAVY from 2003 to 2008 as a Special Operations Search and Rescue Veteran that was involved in a massive aircraft carrier fire on May 22, 2008. The fire caused $70 Million of damages, where he was exposed to a Toxic fire-fighting chemical called AFFF. Dan was directly involved in the rescue of four trapped sailors who were at the bottom of the ship operating a fuel station when they were surrounded in massive heat. After several failed attempts by the ship fire-fighters, the group of operators were asked to assist. Dan and his team rescued all four sailors successfully without loss of life.

In 2012, Dan had been diagnosed with PTSD and had been seeking treatment from the VA. This started him down the path of learning the VA healthcare system and how to navigate it. Dan reports that “going through special ops training is one of the hardest things any human can do. The training alone eliminates 98% of the people who try.” 2020 was the year Dan was diagnosed with Membranous Nephropathy after being hospitalized for Nephrotic Syndrome. This was a completely new world to him. Dan quickly learned that with the lack of information available regarding this rare kidney disease that he needed to be as knowledgeable about it as he could. Both night and day while fighting the symptoms of this disease, Dan learned as much as he could. He attacked this disease like it was a rescue mission and failure was not an option.

Dan suffered from collapsed lungs, multiple pulmonary embolisms in his lungs, renal vein thrombosis, high blood pressure, high cholesterol, migraines, two strokes- and all the symptoms of PTSD. He learned that when proteins are spilled, you also lose the anticlotting agents in your blood which placed an individual at high risk for blood clots. Not only was he trying to understand why he was 300lbs (80lbs were water weight), which he gained almost overnight, but Dan had to learn about blood clots and how to survive.

One of his care teams decided to have his kidney biopsy re-reviewed and re-analyzed. This is where they found foreign debris particles in his kidney composed of firefighting suppression foam. Having experienced the VA disability process firsthand with his PTSD claim, Dan filed a new claim with the VA which has taken two years of battles to finally get his disease acknowledged as 100% disabling. Dan has learned how to allow himself to be vulnerable and how to share his story. He prides himself on being a Rare Kidney Disease Advocate. He has had the opportunities to speak in front of various organizations/government agencies such as congress, professional athletes, as well as been invited to be on multiple podcasts, speak with high-level decisionmaking FDA officials and the scientist who created the Rituximab that has helped him reach partial remission. Dan continues to share his story and his life living with the rare disease organization with various outlets.