How many with EMS have died since the start of the disease?
People with EMS can die of many causes, like anyone – such as being in an auto accident. Some with EMS have died of complications of the disease later on in the chronic phase of the disease, and clearly certain deaths were associated with having EMS, which contributed to the deaths, or caused premature death. In some cases, it is hard to know whether or not EMS has played a role directly or indirectly in cause of death. My personal opinion is that at least 125 persons have died directly or indirectly due to EMS out of the 1,500+ cases counted by the CDC. If you add in deaths from all causes, the total would be higher; however, we can’t know for sure how many have died because a registry to monitor deaths and the course of chronic EMS was never set up by the government. In Spain, the government set up a registry to follow victims of TOS (Toxic Oil Syndrome) throughout their lives. It’s too bad we do not have such a registry for persons with EMS.
People with EMS can die of many causes, like anyone – such as being in an auto accident. Some with EMS have died of complications of the disease later on in the chronic phase of the disease, and clearly certain deaths were associated with having EMS, which contributed to the deaths, or caused premature death. In some cases, it is hard to know whether or not EMS has played a role directly or indirectly in cause of death. My personal opinion is that at least 125 persons have died directly or indirectly due to EMS out of the 1,500+ cases counted by the CDC. If you add in deaths from all causes, the total would be higher; however, we can’t know for sure how many have died because a registry to monitor deaths and the course of chronic EMS was never set up by the government. In Spain, the government set up a registry to follow victims of TOS (Toxic Oil Syndrome) throughout their lives. It’s too bad we do not have such a registry for persons with EMS.
