Multiple Chemical Sensitivities, Part Two

Karen Schaefer- Last week, four women gathered in a small room at Southwest General Health Center in Berea to hear a lecture about a mysterious malady. But none of the women chose seats in the lecture hall. Instead they listened over a loudspeaker, cloistered in a closed room barricaded with sterile sheets jammed tight against the bottom of the door. All four of these women suffer from Multiple Chemical Sensitivities or MCS, an abnormal reaction to airborne chemicals given off by cleaners, perfumes and other artifacts of everyday life.

Jillian Buettner- Headaches, burning eyes. The next day you feel like you were hit by a truck.

Sherry McNeil- I thought it was just allergies. Although it was very obvious that when I went home on Friday, Saturday and Sunday I would start to feel better. Monday it would start all over again.

KS- Jillian Buettner and Sherry McNeil having been living with the disabilities of MCS since they were first diagnosed several years ago. Both agree that it has permanently changed the way they live.

JB- Do I look like a sick person? No... My family still doesn't get it -- when I say, please don't wear perfume on Christmas so I can come and be with everybody. I've missed Christmas with my family the last several years because of it.

KS- Like many with MCS, both women have symptoms that are triggered by strong odors and airborne chemicals common to life in the 21st century. Vice President of Nursing Rosemary Reiner says the growing number of patients with MCS has led Southwest hospital to make some changes. Here, nurses are working with a consultant to learn how to keep chemically sensitive patients from getting even sicker.

Rosemary Reiner- We're working with Toni Temple to develop a kind of generic protocol, so that if a patient comes into the emergency room or is unexpectedly admitted, we would have the written protocol about what is needed to be done as far as cleaning the room appropriately so it's not sensitive for the patient.

KS- Reiner says that means things like having sterile sheets on hand, avoiding bleach and other harsh cleaners, and serving foods without dyes or preservatives. But it's not just nurses who are involved in the education process. Doctors too are learning about what's needed to take care of people with MCS. Michael Connell is a pharmacist in Fairview Park who compounds prescriptions for people with special medical needs.

Michael Connell- A lot of these types of patients are allergic to either dyes, preservatives or actually the excipients or fillers or binders that are in capsules and liquids. We can prepare capsules without any dyes, we can change the filler if they're allergic to a lactose, which is like a milk sugar, that is in a capsule. These are drugs made to order -- they're all prescription-driven, based upon the need of the individual patient.

KS- The only way for most people with chemical sensitivities to get any relief is to avoid exposure to the chemicals that trigger their reactions. But for some people, that means becoming a virtual prisoner in the only safe place -- home. And for people like former nurse Laurel Young, it can also mean permanently losing the ability to work.

Laurel Young- I've spent thousands of dollars of my own to try to identify this, because they said, well, you're just making this up. And I said, oh my God, I'm a nurse, I am not cheating you and I am not lying. And I lost my job. And they are still fighting this, because they feel it's not work-related.

KS- While no one is sure what causes MCS, there are protections for people like Laurel under the Americans with Disabilities Act. And ten years after MCS was first widely recognized, the federal government is now taking steps to educate people about new ways to design healthier buildings. Jim Raggio is an attorney for the ACCESS Board, the federal agency that oversees issues of accessibility for people with disabilities. He says a recent study on indoor air quality by the Environmental Protection Agency made him aware that something could finally be done to help people with MCS.

Jim Raggio- What impressed us is that it is very widespread. We hear from the public on a lot of issues, but this is one of the few issues where we have seen such overwhelming response from the public in terms of some sort of call for action.

KS- Raggio says he's also impressed by Southwest General Health Center's efforts to educate its staff about chemical sensitivities. This year the ACCESS Board began its own push for fragrance-free public meetings. This fall, the government will publish a technical manual with information about healthier building design and materials. And over the next few years, the ACCESS Board will work closely with the EPA and MCS advocates to design new federal guidelines for chemical-free workplaces and public buildings. In Cleveland, Karen Schaefer, 90.3 WCPN, 90.3 FM.

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