May 25, 2014; Washington Post
What would you do if your illness were inexplicable, not fitting into any known categories? Remember the 1976 outbreak of what eventually became known as “Legionnaires Disease” due to a previously unknown strain of bacteria causing a deadly version of pneumonia? It must be much worse for military veterans returning from overseas engagements with diseases that simply defy current medical knowledge.
In Falls Church, Virginia, Dan Sullivan’s brother, a Marine sergeant who had been ill the four years since he had returned from Iraq, died one day, sitting in his chair, his medical records at his side. Tom Sullivan hadn’t committed suicide or imagined a list of ailments, but succumbed at the age of 30 to a pneumonia that couldn’t be explained, other than having had something to do with his deployment in Iraq.
Five years after Tom Sullivan’s death, his family has established the nonprofit Sergeant Sullivan Center for the study of “undiagnosed post-deployment illnesses.”
After the 1991 Gulf War, some veterans returned with “Gulf War syndrome,” an ailment with such symptoms as respiratory, heart, and bowel problems accompanied by chronic pain. (Doctors called it “chronic multisymptom illness.”) Tom Sullivan’s disease might have been similar, with a host of real but unexplained symptoms.
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“I saw him suffer in terrible pain, terrible fear, because no one was explaining what was happening to him,” Tom Sullivan’s mother, Jeanne, said. “He thought he was alone.”
The new organization might not be the source of scientific cures, but it might help the ailing veterans’ complaints get the serious treatment they deserve. “What we’re really concerned with…is not so much what he died of,” Peter Sullivan, Tom’s father, said, “but how he was treated when he was alive.”
The Sullivan Center has already raised $250,000 for research into the causes of some undiagnosed illnesses, but Craig Postlewaite, the director of force readiness and health assurance at the Defense Health Agency, emphasizes the need to focus on treatment for these long-suffering veterans rather than getting “too hung up on the cause.” Dan Sullivan concurs, saying, “The target of our grants thus far has been on diagnosis over cause — i.e., you can diagnose cancer even if you do not know the cause. There has been very little funding on diagnosis of the unexplained, which is why we focused on this issue.”
It’s actually a mix of the two. Remember how Post-Traumatic Stress Disorder sort of sneaked up on the public? The challenge was twofold: exploring what was really behind PTSD while also getting PTSD-sufferers the treatment they needed. That will be the challenge for the Sergeant Sullivan Center.—Rick Cohen
This article has been altered from its initial release. Tom Sullivan’s father’s name is Peter, not Dan.