A colleague recently reminded me that I did not include in the book the role that NORD played in solving a medical mystery. During the late 1980's we received a phone call from the Centers for Disease Control (CDC) asking if we were monitoring people with different diagnoses. We were not monitoring them but when they contacted us about a specific disease we put them into our computer along with the name of the disease that they asked about. We did not know if they had the disease, or if it was a friend, relative or acquaintance who may have been diagnosed with the illness.
The CDC person seemed relieved that we were keeping track of inquiries about specific diseases because he wanted to know how many people had inquired about eosinophilic myalgia. We found about 25 people in our computers who had inquired about that disease. He said that CDC was very interested in contacting these people and interviewing them. I responded that we kept all names confidential, and we could not give him the information without the inquirer's permission. So he asked if we would contact the individuals and request their permission to give their contact information to the CDC. I asked if there was a public health problem associated with the disease, and he told me that clusters of the disease were appearing with one thing in common: the patients were using a nutritional supplement known as "tryptophan" as a sleep aid, and CDC suspected that that the supplement may be causing the disease.
We contacted the individuals. Some were friends or relatives of people who received the diagnosis, but others were people who were diagnosed with eosinophilic myalgia, or were spouses of people who died from the disease, or caregivers of seriously ill people who were suffering from the disease. All of them gave us permission to pass their contact information to the CDC. They were extremely grateful that a government agency was actually studying the disease.
I remember tracking down one patient who was in a hospital for several weeks. She was very frustrated because doctors didn't know what caused the disease, and they didn't know how to treat it.Her condition was deteriorating quickly. She asked if I knew what caused it and I told her I only knew some unproven theories but some doctors suspected that it may be caused by a supplement called tryptophan. "Tryptophan", she yelled, "I take tryptophan every night to put me to sleep," she said incredulously, "I even brought it with me here to the hospital because I knew I would have trouble sleeping."
The individuals we located with eosinophilic myalgia were interviewed and studied by the CDC, and most were users of tryptophan. In 1990 the FDA finally had enough data to take Tryptophan off the American market. The Japanese company who manufactured the supplement had made what they thought was a minor change in their manufacturing process, but it made their product toxic to humans. Several individuals died and others remained chronically ill for months or years before the CDC tracked down the culprit. And because FDA is prohibited by law from regulating nutritional supplements, they can only take action after people die from one of these products.
Today tryptophan is back on the U.S. market, and it is still used as a sleeping aid. I truly hope that history does not repeat itself.