(Host) Until recently, most Vermonters had never even heard of sarcoidosis.
But now the state is spending millions of dollars to move workers out of a state office building in Bennington because of the disease.
At least a half-dozen cases of sarcoidosis have been diagnosed among people who’ve worked in the building.
VPR’s Susan Keese met with several workers who described what it’s like to live with the illness.
(Keese) Terry Hill used to love cross country skiing, walking on the beach and shopping for antiques. Now at 50, the former human services supervisor walks gingerly, with a cane.
(Coffee shop sounds)
(Keese) She takes a seat in a Bennington coffee shop but her coat presents a problem.
(Hill) “I can unzip but you’re going to have to help me take it off, you see what I mean? Simple things…”
(Keese) She says she almost had to cancel because she couldn’t get her socks on.
(Hill) “You know I can’t do like other people. I have to grab on to my leg (Grunts) and it just won’t go. But see these are things you have to adjust to.”
(Keese) Hill worked in the Bennington State Office building for 15 years, until sarcoidosis forced her into early retirement. She says workers have long complained about headaches, fatigue, breathing problems and odors in the building. The state looked into it, but never found a cause.
Her own long struggle started with a rash on her nose in 1992. A dermatologist did a biopsy and identified it as sarcoid.
(Hill) “And that’s when he suggested I have my lungs checked. He said usually if it’s on your skin it may be in your lungs and lymph nodes. So I had a chest X-ray and indeed it was in my lungs and lymph nodes.”
(Keese) Hill didn’t respond to the steroids her specialist prescribed. Within a year she went from having trouble breathing to having trouble walking. A neurologist confirmed that the disease had moved into her muscles.
No one knows what causes sarcoidosis though some researchers suspect a link with molds, fungus and mildew.
Dr. Michael Algus is a pulmonologist at Bennington’s southwest Regional Medical Center.
(Algus) “It’s an immunologic type of disease. And the body’s lymphocytes, white blood cells, get overactive and they work on the body itself.”
(Keese) Algus says sarcoidosis typically starts in the lungs and lymph nodes. It often goes away on its own, or responds to steroids.
(Algus) “Some you wouldn’t even know about unless you got a chest X-ray for some other reason. Some people, ten maybe 20 percent go on to a devastating type of illness. It affects the lungs, it goes into the meat of the lungs. And it can affect other organs. And those people tend not to recover on their own or with medications.”
(Wood) “The way that I understand it is that basically your body’s fighting against itself.”
(Keese) Public Defender Marie Wood spends 25 or 30 hours a week in Bennington District Court. Her long ordeal with sarcoidosis started when she began to lose her vision in her left eye.
She now uses a magnifying machine for reading and hasn’t been able to drive for years.
(Wood) “Unlike some of the other sarcoidosis people, I have it in my brain. So my immune system is treating my optic nerves like they’re a foreign body.”
(Keese) David Miner’s diagnosis, the fourth known at the time, was the one that galvanized the workers and eventually the state. Experts say it’s extraordinary to see this many cases of sarcoidosis in a population of less than 200.
Miner works in Probation and Parole. The former hunter and outdoorsman has been sick since 2005. Miner’s wife Valerie is a foster care coordinator. She’s among those in the building who’ve been diagnosed with asthma.
(Miner) “And it’s changed our life, which we’re slowly accepting that and it gets pretty emotional. We continue to do our day-to-day work. But when we have to stop and think about other things we’d like to do but can’t do, it gets really sad.”
(Keese) Miner says she’s grateful that the state is moving fast now to get workers out of what she believes is a sick building. She just wishes it could have happened sooner.
For Vermont Public Radio, I’m Susan Keese.