Bequest funds the search for answers in mystery illness

They were symptoms that couldn’t be explained. Chronic headaches, nausea, respiratory problems, weakness, irritability, problems with memory and concentration, and depression—all with seemingly no cause.

Sometimes, this mysterious cluster of symptoms was called “sick building syndrome.” For those who served overseas, it became known as “Gulf War illness.”

Then in the early 1990s, the phenomena reported by physicians worldwide was given a new term: Toxicant-induced Loss of Tolerance, or TILT.

TILT is a sensitivity to low-level chemical exposure, and the term was coined by Claudia Miller, M.D., M.S., professor emeritus at the Health Science Center. A research-validated tool to assess TILT, called the Quick Environmental Exposure and Sensitivity Inventory, was then created and is now the most-used screening instrument for chemical intolerance worldwide.

TILT occurs in one of five primary care patients, but is rarely diagnosed by practitioners.

“It’s not a rare event. You have many people who are suffering from these symptoms, but they are labeled as fibromyalgia or other problems,” said Carlos R. Jaén, M.D., Ph.D., chair of the Department of Family and Community Medicine. “So even if you present with these symptoms, it’s not a formally recognized condition and we don’t have formal training on it. We need to develop more ways of approaching these patients more systematically and as a team.”

For years, Marilyn Brachman Hoffman felt misunderstood by her health care providers, who found her cluster of symptoms puzzling. She knew there was something beyond what her doctors were seeing.

“She went all around the world looking for help and nobody could pinpoint what was going on,” Dr. Jaén said. “Then she worked with Dr. Miller and found somebody was actually making sense of what she was experiencing. In her will, there was an explicit request to fund studies related to this problem.”

After her death, The Marilyn Brachman Hoffman Foundation gave more than $2.7 million to create the Hoffman TILT Program. Over three years, the money will fund interventions in homes of sensitive people, and will be used to develop a coordinated approach to outreach, education and research for patients and health care professionals.

“We are really the world’s headquarters for this issue,” Dr. Jaén said. “No one is working in this same area the way we are. This grant brings together the advancing of additional knowledge by doing studies in homes of those affected, but it also is a very heavy component of education. People need to be aware that this is an important issue.”

The goal of the TILT program is to build a pipeline of health professionals who can recognize, understand and address TILT and the challenges faced by patients. It also aims to improve health outcomes of patients through home visits to identify triggers and appropriate interventions.

“This leverages the new knowledge that has been developed at the Health Science Center,” Dr. Jaén said. “It gives us ways to transform the way we educate this generation and future generations of health care professionals and identify and alleviate this level of suffering.”