July 27, 2005
To Whom it May Concern,
I lived in Providence,
RI from January of 1995 through August of 2004. Soon after my arrival, I
went on disability for the disabling illness Chronic Fatigue Immune Dysfunction
Syndrome (CFIDS), which I had contracted 2 1/2 years earlier. Later,
I developed a secondary condition called Multiple Chemical Sensitivities (MCS),
which caused me to get extremely ill from exposure to common chemicals found in
body care products, laundry detergents, cleaning agents, pesticides, and
building materials. Like others with severe MCS, I risked permanent
injury or death from exposure to ubiquitous chemicals, and had to practice
nearly total avoidance of them to keep from getting worse. I was
already generally homebound and mostly bedridden, and sorely without services
or practical help, so any worsening of my condition was a terrifying
prospect.
While CFIDS made my
life very restricted, MCS threw me into exile. I suddenly found that
almost no venues were accessible to me due to the copious use of
fragrance-containing body care products, toxic cleaning products, and
health-threatening building materials. This meant that all basic
human services were denied me -- including legal services, health care, and
home care. I could not pursue medical care in Rhode Island, except
for on rare occasions when I found a fragrance-free* (see terminology below)
care provider to do a home visit, or when I educated one doctor to make his
office fragrance and chemical free so that I could go to appointments. My
reactions to chemicals became so severe that I could suffer a permanent
worsening of my condition from one exposure, often leaving me bedridden for
months at a time (even years).
Despite having one of
the most disabling conditions around (CFIDS has been found in studies to be
more functionally disabling than heart disease, other chronic illnesses, and
HIV), I found it nearly impossible to get home care services such as visiting
nurses or PCA/homemaker services to accommodate my secondary disability,
MCS. For example, I was approved by a program in Rhode Island for
funded homemaker services that were direly needed: however, the agency would
not allow me to seek out an attendant who could be fragrance and chemical-free,
and thus I had to forgo this much-needed help. Similarly, my doctor
ordered potentially helpful visits from a Visiting Nurse, but the VNA would not
provide me with a nurse who accommodated my disability, so I had forgo those
services as well.
When I had abnormal
tests -- such as abnormal EKGs -- I could not see specialists for the most part
due to the toxic office spaces and nurses and technicians using
fragrance-containing products. When I had breast surgery to remove
a lump, I could not go for my follow-up visits due to the toxic cleaning
products used in the facility. Specialty appointments -- such as
gynecological care or dental care -- were generally impossible. None
of these offices made efforts to accommodate people with MCS, and I could not
enter their facilities without risking severe reactions.
Emergency medical care
was my greatest fear. Although Miriam Hospital was just blocks from
my house, they did not have any provisions in place for the treatment of
patients with MCS. I could be severely injured from hospital
cleaning products, latex, sanitizing chemicals, and -- mainly -- the staff and
their personal care products. Ironically, doctors and nurses made me
ill to the point that I could barely even talk and advocate for my own care,
due to the fact that they all wore scented products and washed their hands
frequently in scented soaps. Chemical reactions caused instant
cognitive dysfunction which made me
lose memory, stammer, have breathing problems, and lose the ability to form
sentences. I knew that if I had a situation requiring emergency
medical care, I was in big trouble.
One such occasion
occurred when I began to have symptoms of acute appendicitis. I
suddenly began to have unbearable abdominal pain (especially when I tried to eat or drink), a high fever, and
other symptoms that were unusually severe so I ultimately needed to go to the
ER. I figured I would be out of there in no time, but after running
some tests the staff wanted to admit me for two days. Due to my
symptoms and tests, they thought I had appendicitis (though the tests were not
fully conclusive) and wanted to wait for the staff surgeon to arrive to decide
if they should operate immediately or simply keep me under
observation. I was so delirious that I signed my name on the admission
papers. When I fully realized what had transpired, I begged the nurses to let
me leave. I was getting sicker by the hour, but not from
appendicitis -- from nurses hovering near me with hairspray, deodorant, and
scented soap. Thankfully, once I put a call in to my physician (the
one with the scent-free office), he advocated for me and got them to release
me, against their better judgment. They told me I could be in a
life-threatening situation, that my appendix could rupture, and that it was
against their better judgment to send me home. They did not
comprehend that it was even more life-threatening for me to stay in their care.
Fortunately, one of my
neighbors was a scent-free acupuncturist who was willing to do a home visit,
and she treated me with alternative medicine (in China, acupuncturists are
often the first line of defense against appendicitis). Miraculously,
her treatment cleared up my symptoms, even though I spent well over a week
unable to eat solid food.
Since so many people
suffer adverse reactions to chemicals in fragrances, and since children and
others are increasingly vulnerable to chemicals in cleaning and building
products, it is imperative that health care facilities address these
concerns. For those of us with MCS, CFIDS, and related conditions
such as Gulf War Syndrome, these chemicals can be life-threatening or can cause
permanent neurological damage. Very few hospitals and medical
facilities take into account the underserved population of chemically
vulnerable people. We need facilities we can go to for health care,
and providers who make a commitment to use fragrance free products so that
their clothes, hair, and skin won't make patients sick.
I believe all health
care facilities in Rhode Island -- and particularly those that are state-funded
-- should implement chemical and fragrance-free staff
policies. Staff should be fully educated on the risks of their
personal care products and laundry soaps for patients with asthma, MCS, and
other conditions. Additionally, RI hospitals should implement safer
cleaning policies, such as those recommended in Deirdre Imus' "Greening
the Cleaning" or in the Health Care Without Harm guidelines (see
references below) to minimize the use of harmful chemicals in health care settings. State-funded
programs such as those provided by the VMA and Centers for Independent Living
should always have provisions for those who are chemically vulnerable.
In addition, hospitals
should keep on hand special guidelines and "crash carts" for patients
with MCS. Staff should know to isolate MCS patients from others
patients, keep them near open windows if possible, make sure they receive
fragrance-free bed linens, provide them medical oxygen with nontoxic tubing,
and ask them about their specific needs. In addition, staff should
be made aware of the special carts for MCS patients, and these carts should
offer latex-free gloves, adhesive-free bandages (or bandages utilizing natural
adhesives), tygon oxygen tubing or specially treated cannulas, hydrogen peroxide
swabs, fragrance-free Castile soap wipes, and other items that will create a
non-injurious environment for the chemically vulnerable. In
addition, signs should be available to place near the rooms of the chemically
vulnerable, to warn doctors and other staff not to bring in toxic products,
flowers, and other items that might cause a reaction.
Thank you for
listening to these concerns.
Best wishes,
Peggy Munson
Editor of “Stricken:
Voices from the Hidden Epidemic of Chronic Fatigue Syndrome” http://www.angelfire.com/ri/strickenbk
*"Fragrance
free" is an often-misunderstood term. It does not simply mean
"without perfume." To be fragrance free, providers must
use natural, fragrance free body care products to substitute for their
detergent, lotion, shampoo, soap, deodorant, hair products,
etc. Nontoxic, fragrance free products are typically only sold in
health food stores or through catalogues, as conventional stores use the terms
"unscented" and "fragrance free" to refer to products that
contain masking fragrances, which are chemical fragrances that "mask"
scents but still injure the chemically vulnerable.
RESOURCES:
The Living
Source:
Supplies tygon oxygen tubing and specially treated cannulas for the
chemically sensitive. http://www.livingsource.com/
Greening the
Cleaning Product Line: Institutional Cleaning Products Specifically
Geared Toward Hospital Use and Reduced Toxicity. Pricing and Ordering, 201-336-8071 http://www.dienviro.com/index1.aspx?BD=17866
Health Care
Without Harm: http://www.noharm.org/
Needs http://www.needs.com Sells an extensive selection of fragrance
free products