What you should know about AAV and service-connected disability

I was doing the thing I swore I wouldn’t do at 8 a.m. — scrolling through a support group message board before having my morning coffee — when a post stopped me cold. A woman named Beth wrote that the U.S. Department of Veterans Affairs (VA) had just decided her granulomatosis with polyangiitis (GPA) is a service-connected disability at 60%, bringing her total compensation up to 70%. “Such a relief after fighting for this for such a long time,” she wrote.

I read it twice. Because here’s something I didn’t know, and maybe you don’t either: A rare autoimmune disease like ANCA-associated vasculitis can be tied to military service. And if you’re a veteran — or you love one — that single fact can change everything.

I asked Beth if I could share her story here. She said yes. So let me tell you what she taught me.

Beth got out of the service in 2003. She’d had upper respiratory issues almost constantly since 1998, the kind of thing that just becomes your normal. Then her trachea narrowed so badly she was having shallow breathing attacks. It wasn’t until late 2018 that an allergist at the VA finally said, “This isn’t allergies.”

Her rheumatologist took almost a year to land on the diagnosis. By then she’d been out of the military for over 20 years. Beth’s comment was an important reminder: “I have been out for over 20 years, so it’s not too late [for you] to try.”

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Here’s the part that surprised me most. When most of us hear “service-connected,” we picture the PACT Act and burn pits. That didn’t apply to Beth. What did apply was something called toxic exposure risk activity, or TERA. In her military job, Beth worked around gas and chemical fumes in unventilated spaces, low-frequency antenna and radio emissions, and trichloroethylene (TCE), a solvent used to clean weapons until the early 2000s. TCE can cause immune system dysfunction. These aren’t the dramatic types of exposure that people imagine. They’re the quiet, everyday ones that nobody warned anyone about.

The piece that pulled it together was a nexus letter from her rheumatologist connecting the TCE exposure to her disease. If you remember nothing else, remember that. A doctor willing to write a letter confirming the link between your service and your diagnosis is worth more than I can say.

Beth didn’t do it alone, which I loved hearing. The veterans in that thread were generous with hard-won knowledge. Another veteran, who’s 100% VA disabled with GPA, said to go to your local VFW, AMVETS, or American Legion and talk to their service officer. They will help, and it’s free. There’s also your county Veterans Service Officer, who can help you actually file the claim.

Beth eventually worked with a group of people who used to process VA claims themselves. They weren’t lawyers, and they were paid only if the rating goes up. A small amount came out of Beth’s back pay. She said it was worth it.

I’m not a veteran, and I can’t walk you through the paperwork. But I can tell you what this thread reminded me of, which is the whole reason I keep writing this column: We know things together that none of us know alone. Beth almost missed this. She said that if it weren’t for a friend, she wouldn’t have known that any of this was possible.

So, if you served — or your spouse, parent, or kid did — and you’re living with ANCA vasculitis, please don’t assume the connection isn’t there. Ask about TERA. Ask about a nexus letter. Talk to a service officer. At certain military bases and on certain jobs, the exposures are more common than anyone will tell you.

Beth fought a long time for one phrase: service-connected. The relief in her post was real. I wanted to pass it down the line, because somewhere out there is a veteran reading this who needs to hear that it isn’t too late.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.