PSORIATIC ARTHRITIS NEWS AND VIEWS
VOL. 2 ISSUE 27 December 31, 2002
PSORIATIC ARTHRITIS MEDICAL NEWS
Well, as I sit at my computer and ponder what medical information to select
from my research files for the 27th and final newsletter of 2002, I can't
help but think about the previous 26 Psoriatic News and Views Issues
published this year. To help refresh your memory and maybe re-kindle a look
back into the archives, here is a small sampling of what was covered during
2002:
Seasonal Affective Disorder (SAD). Causes of Depression and what can be done
about it.
Inflammation Control Mechanism determined by Doctors at NIAID.
The Mind and Skin Connection.
Enbrel approved by FDA for Psoriatic Arthritis.
Over 1 million U.S. adults suffer from Psoriatic Arthritis.
Raynaud's Phenomenon from Harvard Medical School.
Extensive information on Juvenile Arthritis.
The Risks of Glaucoma.
Bechet's Syndrome - a lesser-known form of Arthritis.
How do Drugs get to the Market?
Polymyalgia Rheumatica - Long term prognosis.
Sjogren's Syndrome - The Chronic Immune Disorder.
How to Guard Yourself against Medical Errors.
Lyme Vaccine pulled off the market.
Three part series on the Understanding and Treatment of Pain.
Rheumatoid drug Methotrexate may prolong your life.
New Arthritis Drug - Codename D2E7 - Human Monoclonal Antibody.
The facts about Fibromyalgia and treatment choices.
The link between Rheumatoid Arthritis and Heart Disease.
Three part series on the shortages and high cost of Biotech drug Enbrel
Why Doctors are shunning patients with Medicare.
How the Five Senses Change with Age.
The amazing importance of Folic Acid to your health.
The Science of Aging from Harvard Health.
Arthritis is a Life Sentence for Gordon Elliott of Australia
Personal Health Methods to Reduce Blood Pressure.
The American Medical System is Nearing Collapse - U.S. Secretary of HHS
Herbs and Alternatives: They're Here to Stay.
Scientists Finds how Painkiller Damages Liver.
Medication Effects on your Hearing.
Heart Attack Symptoms are Different in Women.
Possible Vaccine to target Sjogrens Syndrome.
HealthTalk Interactive: Arthritis Treatments-New Medications-New Indications
Experts Lay Down the Law on Acid Reflux
Interleukin-4 Injections Hold Promise for Treating Psoriasis.
The Role of Corticosteroids for Arthritis.
This list of 36 items is only a part of over 170 articles, news releases,
special series, commentaries, etc. that were published during 2002. Now,
let's get on with the latest news.
STUDY QUESTIONS CELEBREX USE FOR ULCERS - BOSTON (AP)
The blockbuster arthritis drug Celebrex doesn't protect the stomach from
dangerous bleeding ulcers as well as thought, a study suggests.
Celebrex and two similar new anti-inflammatory drugs are heavily advertised
as being safer for arthritis patients based on earlier research that found
they caused fewer ulcers and other gastrointestinal complications than older
anti-inflammatory medicines. Together, the three new drugs have annual sales
exceeding $6 billion.
But their safety has been called into question recently. The new study, which
focused on arthritis patients at high risk of recurrent ulcers, escalates the
controversy involving Celebrex, showing nearly 10 percent each year would
develop another bleeding ulcer.
The study found the same thing for an older anti-inflammatory drug combined
with ulcer medicine Prilosec, which doctors often give arthritis patients to
protect their stomachs. In addition, neither treatment protected as many
patients from dangerous kidney complications as past studies showed, the
researchers said.
The Hong Kong researchers and some other experts said the results, while
showing the treatments work the same, indicate more study is needed on
preventing bleeding stomach ulcers in vulnerable older people who for years
ease joint pain with nonsteroidal anti-inflammatory drugs, or NSAIDs.
"I think patients and doctors need to be aware ... there is a risk of
gastrointestinal bleeding and there is a risk of renal toxicity," so
high-risk patients should be monitored closely by their doctor, said Dr. John
H. Klippel, medical director of the Arthritis Foundation.
A spokesperson for Pharmacia Corp., which makes Celebrex, said the company
interprets the findings as showing Celebrex as reducing the risk of
gastrointestinal complications in high-risk patients.
"It is our feeling that these findings should guide future research in the
area," spokesman Paul Fitzhenry said Wednesday.
Representatives of AstraZeneca Pharmaceuticals LP, which sells Prilosec, did
not return calls seeking comment Wednesday.
The study, reported in Thursday's New England Journal of Medicine (news - web
sites), included 287 patients who had a previous bleeding ulcer and so were
at very high risk of developing another, potentially life-threatening ulcer.
Half took the anti-inflammatory diclofenac together with Prilosec; half
received Celebrex. It is one of three brand-name NSAIDs in a newer class
called cox-2 inhibitors because they block the cox-2 enzyme. It produces
chemicals called prostaglandins that cause pain and inflammation in the
stomach as part of the body's repair process.
These drugs, which also include Vioxx and Bextra, do not block action of the
cox-1 enzyme, which protects the lining of the stomach. Older NSAIDs such as
diclofenac block both cox enzymes, and so can cause stomach irritation and
exacerbate ulcers.
Complications from taking older anti-inflammatory drugs hospitalize about
107,000 Americans, and ulcer complications kill an estimated 16,500 each
year.
Of the study patients receiving Celebrex, about 5 percent had recurrent
bleeding during the six months of research, compared with about 6.5 percent
for those getting diclofenac and Prilosec.
However, that equates to annual rates of about 9 percent and 11 percent,
respectively, Dr. David Y. Graham of the Veterans Affairs Medical Center in
Houston wrote in an accompanying editorial.
"The results were unexpected: Neither regimen provided a good or even
acceptable level of protection from recurrent bleeding," Graham wrote.
Both treatments did a good job in reducing pain and enabling patients to
perform daily activities over the six-month experiment.
But about 25 percent of those in the Celebrex group and 31 percent in the
diclofenac/Prilosec group suffered kidney complications, including high blood
pressure and swollen ankles; about 6 percent in each group suffered
life-threatening kidney failure.
Klippel said that shows doctors must monitor high-risk patients on these
anti-inflammatory drugs for increased pain and bloody stools indicating an
ulcer flare up. They also should watch for swelling in the extremities and
elevated blood pressure -, signs the kidneys can't excrete enough fluid.
"Physicians should avoid prescribing these drugs to patients with known
kidney diseases, poorly controlled hypertension and heart failure," said the
lead researcher, Dr. Francis K.L. Chan. "Previous studies reported a very low
incidence of kidney side effects because they excluded patients with major
medical illnesses."
Still, the study backs up the American College of Rheumatology's current
guidelines for treating arthritis and gives doctors options, said Dr. Todd
Stitik, associate professor of physical medicine and rehabilitation at
University of Medicine and Dentistry of New Jersey in Newark The Associated
Press. All rights reserved.
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COPING STRATEGIES FOR CHRONIC ILLNESS
When you get an illness such bronchitis or the flu, you know you will be
feeling better and functioning normally within a week or so. A chronic
illness is different. A chronic illness may never go away and can disrupt
your lifestyle in many ways.
EFFECTS OF CHRONIC ILLNESS - Pain and fatigue may become a frequent part of
your day. Physical changes from a disease process may affect your appearance.
These changes can diminish your positive self-image. When you don't feel good
about yourself, you may prefer isolation and withdraw from friends and social
activities.
Chronic illness also can influence your ability to function at work. Morning
stiffness, decreased range of motion and other physical limitations may
require you to modify your work activities and environment. Decreased ability
to work can lead to financial difficulties. For the homemaker, a specific
task may take much longer to accomplish. You may need the help of your
spouse, a relative or a home health-care provider. As your life changes, you
may feel a loss of control and become anxious about the uncertainty of what
lies ahead.
STRESS - Stress can build and influence how you feel about life. Prolonged
stress can lead to frustration, anger, hopelessness, and, at times,
depression. The person with the illness is not the only one affected. Family
members are also influenced by the changes in the health of a loved one.
HOW CAN I MAKE MY LIFE BETTER? - The most important step you can take is to
seek help as soon as you feel less able to cope. Taking action early will
enable you to understand and deal with the many effects of a chronic illness.
Learning to manage stress will help you maintain a positive physical,
emotional and spiritual outlook on life.
A mental-health care provider can design a treatment plan to meet your
specific needs. Strategies can be designed to help you regain a sense of
control over your life and improve your quality of life, something everyone
deserves. At times, if depression is present, medications other than those
treating the physical illness may be ordered to help lift your mood.
There are many types of help available for people with chronic illnesses.
Among them are support groups and individual counseling.
Support groups provide an environment where you can learn new ways of dealing
with your illness. You may want to share approaches you have discovered with
others. You will also gain strength in knowing that you are not facing
hardships alone.
Sometimes people have problems that are better addressed in a one-on-one
atmosphere. By participating in individual counseling, you may more
effectively express sensitive or private feelings you have about your illness
and its impact on your lifestyle and relationships. Copyright - The Cleveland
Clinic.
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EVEN "NORMAL" BLOOD PRESSURE COULD KILL
By Salynn Boyles - WebMD Medical News - Reviewed By Michael Smith, MD
Even "normal" blood pressure may increase your risk of dying from a heart
attack or stroke, according to a new study. Researchers found that the higher
the blood pressure, the higher the risk of dying -- even for people in the
normal blood pressure range.
Researchers found that in people 40 and older, each 10-point decrease in
systolic pressure -- the top number -- dropped the risk of death from stroke
by 40% and the risk of death from a heart attack by 30%. This was true even
for those with blood pressures considered to be normal.
"Our findings suggest that there is really no threshold when it comes to
reducing [heart attack and stroke] risk," lead investigator Sarah Lewington,
D.Phil, tells WebMD. "Blood pressure was strongly associated with death from
heart disease and stroke, even in those in the normal range."
By current standards, blood pressure is considered high when it hits 140/90.
But the new study questions this cutoff. In fact, the researchers found that
the risk of death continued to fall the closer someone's blood pressure was
to 115/75. Optimal blood pressure is currently thought to be less than
120/80.
In the study, published in the Dec. 14 issue of The Lancet, the researchers
looked at 61 previous studies of more than one million people. Among people
aged 40 to 69, a 20-point drop in systolic pressure or a 10-point fall in
diastolic pressure reduced the risk of death from stroke and heart attack
twofold.
The findings also suggested that blood pressure is an important cause of
death from heart attack and stroke in people over the age of 70. "There has
been some question about whether there is a lot of benefit to be gained by
lowering blood pressure in the elderly," Lewington says. "Our analysis showed
that it can definitely have an impact on deaths."
Doctors typically put patients on medication when their blood pressure is
consistently above 140/90, but Lewington says the new findings and other
recent studies suggest that people with lower blood pressures could benefit
from treatment.
A Japanese study presented at the American Heart Association annual meeting
in September found that lowering blood pressure to less than 130/85 could
reverse the artery stiffness that is associated with heart disease and
stroke. AHA spokesman Daniel W. Jones, MD, tells WebMD that it may be time to
reconsider who should be treated. He says the issue will likely be a major
topic when a national blood pressure commission meets next year.
"The problem is that we are doing a dismal job of getting people to the
current goal of [below] 140/90," he says. "Our focus right now needs to be on
getting larger numbers of people at least to that goal, but there is
increasing evidence that there are benefits to even lower levels."
SOURCES: The Lancet, o Sarah Lewington, MSc, D Phil, research fellow, Oxford
University, Oxford, U.K. o Daniel W. Jones, MD, American Heart Association,
executive associate dean, University of Mississippi Medical Center.
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MEDICAL RESEARCH OR DRUG COMPANY SECRETS?
Ideally, medical research should be independent and should receive its
support from non-industry sources, such as governments. However, funding for
such research can be hard to come by, if not non-existent.
In reality, drug companies have become the largest sponsors of medical
research. The research produces valuable information, but a recent report
voiced concern that the sponsors' influence and control over the studies may
represent a conflict of interest.
Pharmaceutical companies represent such a large portion of medical studies
that results could inappropriately impact healthcare policies, leaving them
in favor of drug treatment rather than non-drug alternatives. At the same
time, this research "monopoly" could make it harder for alternative opinions
to be heard, thus furthering the use of drugs and possibly causing important
new routes of research to be overlooked.
The report noted that pharmaceutical companies spend more time on the
generation and dissemination of information than they do producing medicines.
Though this is partly to satisfy licensing requirements and protect patents,
companies also use this data to promote sales of their medications. The
authors worry that as independent sources of information decrease,
prescribers will become reliant on drug-company representatives for
information on medications.
The report, which focuses on multinational drug firms, brings up the fact
that medical research results are selectively released and often kept secret
from the public. Only select data is made publicly available through papers
in medical journals, presentations at medical conferences or product
labeling.
One author stated that when results support a product, there is ample
information released about the product and its functions. Conversely, if a
product does not perform well in a study, information is often hard to come
by.
Publication is a major way that research studies can raise awareness about a
drug, however publishing information that may cast doubt about a drug could
cause product sales to go down. To increase drug sales, it is necessary that
the publication show the product in a positive way. As a possible result of
this, the report states that trials with negative results tend to be
published much later than those with positive conclusions.
Additionally, authors note that company-sponsored studies tend to have
results that favor the sponsor's product much more than those sponsored by
other sources. Though it is unclear why this trend happens, according to the
report, a bias in trial design is possible. The study also notes that drug
companies have threatened legal action to stop the publishing of negative
material and to recover the value of lost sales. Moreover, about 30 percent
of researcher's contracts contain a statement allowing sponsors to delete
information from a report and delay publication.
Many journals also receive income from drug companies through advertising. As
a result, publishers may be influenced to publish results that are favorable
to the sponsors, thereby furthering the prevalence of positive results in
published reports.
Another aspect of the dilemma is that regulations in place do little to
control drug companies' promotions of their products. Much of the policing is
left up to the drug companies' themselves. The authors mention drug firms'
funding of patient-advocacy groups and giving gifts to doctors as potential
problems.
Though authors state that pharmaceutical companies' investment in medical
research produces a lot of valuable information, they believe that the
companies' control over the studies and lack of openness regarding research
threatens patients' best interests. They state that consumers should be aware
of the potential consequences of industry-dominated research. The Lancet:
November 2002; 360: 1405-09
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FDA CRACKS DOWN ON IMPORTED DRUGS - AGENCY LISTS 10 MEDICINES WITH SAFETY
ISSUES
By Adam Marcus-HealthScoutNews Reporter
The U.S. Food and Drug Administration (FDA) is asking field agents to crack
down on illegal imports of 10 prescription medications -- ranging from a
potent acne therapy to the abortion pill -- that require stricter-than-usual
physician supervision.
The FDA is also urging patients to avoid buying the compounds over the
Internet.
"Use of these FDA-approved products without adequate controls or monitoring,
and using versions of these products not approved by FDA, increases the risk
of serious adverse events for patients who might otherwise benefit from the
drugs' use," Dr. Mark McClellan, the agency's new commissioner, says in a
statement.
The action, announced Monday, is one of the first public steps taken by
McClellan, who was approved by the Senate in October.
FDA spokesman Jason Brodsky says the agency doesn't know of anyone who has
been harmed by taking illegally imported drugs on the list. However, he adds,
"it's very unlikely that a patient would report where they obtained the
drug."
The list contains medications that -- because of safety concerns -- require
patient consent forms, physician monitoring or other prescription controls.
It includes:
Accutane (isotretinoin), used to treat severe acne.
Actiq (fentanyl citrate), a powerful painkiller for cancer patients.
Clozaril (clozapine), an anti-psychotic drug for severe schizophrenia.
Lotronex (alosetron hydrochloride), for women with irritable bowel syndrome.
Mifiprex (mifepristone or RU-486), the abortion pill.
Thalomid (thalidomide), used to treat leprosy.
Tikosyn (dofetilide), a drug that helps control abnormal heart rhythms.
Tracleer (bosentan), for treating severe pulmonary arterial hypertension.
Trovan (trovafloxacin mesylate or alatrofloxacin mesylate injection), an
antibiotic used in hospitals.
Xyrem (sodium oxybate), a treatment for sudden weakness in people with
narcolepsy. This drug is similar to GHB, an illegal substance also known as
the "date rape" drug.
Peter Smith, special agent in charge of the U.S. Customs Service's Buffalo,
N.Y., office, says seizures of illegally imported drugs tend to fluctuate,
with a spree of arrests followed by long lulls.
Dr. Edgar Lichstein, chairman of medicine at Maimonides Medical Center, in
Brooklyn, N.Y., says buying prescription drugs over the Internet without a
doctor's help is a "very bad idea." Not only do consumers face serious side
effects, Lichstein says, but they're not equipped to determine how those
medications will react with other drugs they take.
Lichstein says he isn't aware of any of his patients obtaining any of the
substances on the FDA's new list from an Internet outlet.
Jeff Trewhitt, a spokesman for PhRMA, says the drug industry group has heard
reports that some pharmacy Web site sales "circumvent the doctor-patient
relationship. That is downright dangerous. It's like playing Russian
roulette."
SOURCES: Jason Brodsky, spokesman, U.S. Food and Drug Administration,
Rockville, Md.; Peter Smith, special agent in charge, U.S. Customs Service,
Buffalo, N.Y.; Edgar Lichstein, M.D., chairman, department of medicine,
Maimonides Medical Center, Brooklyn, N.Y.; Jeff Trewhitt, spokesman, PhRMA,
Washington, D.C.; Dec. 9, 2002, U.S. Food and Drug Administration, news
release. Copyright © 2002 ScoutNews, LLC.
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PAIN ISN'T THE SAME BETWEEN THE SEXES - PROTEIN LINKED TO GENDER DIFFERENCES
IN PAIN SENSITIVITY -(HealthScoutNews)
Proteins called GIRKS play a major role in male and female differences in
sensitivity to pain and painkillers, say two new studies.
The information may help scientists develop pain treatments specifically
designed for each gender, say researchers from the University of Texas at
Austin.
Men typically can endure more pain than women, and painkillers seem to affect
men and women differently. However, the biological reason for those
differences isn't clear.
In the first study, researchers studied pain sensitivity and responses to
analgesic drugs in mutant mice that lacked a protein called GIRK2. This
protein plays an important role in electrical communication between neurons.
The study found that the male mutant mice, but not the females, had lower
pain thresholds than a control group of normal mice. That showed that the
removal of the GIRK2 protein eliminated gender differences in baseline pain
sensitivity.
The study also found that both types of analgesic tested -- clonidine and
morphine -- were less effective in treating pain in mice that lacked the
GIRK2 protein.
The second study used the same kind of GIRK2-deficient mice and tested their
response to the analgesic effects of several kinds of drugs, including
alcohol, nicotine and cannabinoids, which is the active ingredient in
marijuana.
The researchers found the lack of GIRK2 eliminated the analgesic effects of
some of these drugs in the mutant male mice, but not in the mutant female
mice.
The combined findings of these studies indicate that the GIRK2 protein may be
a critical part of the pain pathway that accounts for gender differences in
pain sensitivity and response to analgesics. The protein may also offer a
promising new target for pain treatment. SOURCE: University of Texas at
Austin. Copyright © 2002 ScoutNews, LLC.
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AMA TO CONGRESS: STOP MEDICARE CUTS
By Peggy Peck (New Orleans)
While waving banners reading, "Fix the Medicare mistake now," "Stop the
cuts," and "Seniors deserve better;" while stomping and chanting, "Do you
hear us now" as the theme from Rocky blared in the background, more than 500
American Medical Association delegates sent a message to Congress: no more
Medicare pay cuts. And if the pay cuts "accounting error" isn't fixed, many
doctors are threatening to pull out of Medicare.
Medicare cut payments to doctors by 5.4% last year and plans to cut payments
by another 4.4% starting February 1, as part of a series of scheduled pay
cuts that will bring physician Medicare pay levels down to 1991 rates by
2005.
As bad as that may sound, what has the AMA members hopping mad -- and many of
the nation's doctors threatening to turn away Medicare patients -- is the
fact that the pay cuts are all caused by an "unintended accounting error"
that crept into the Medicare payment calculations back in 1998 and 1999. The
error involved underestimating the gross domestic product, or GDP -- the
index used to calculate Medicare payments -- at the same time that Medicare
bean counters failed to account for 1 million Medicare recipients.
AMA president Yank Coble, MD, tells WebMD that there is no argument about
this error. "Everyone agrees that an error occurred -- Medicare, Congress,
and the White House." The stumbling block has been in getting the error
fixed. The House of Representatives passed needed legislation three times,
says Coble, but the Senate failed to act, even though "81 senators have
signed on to the bill."
Robert Doherty, executive with the American College of Physicians/American
Society of Internal Medicine, tells WebMD that one of the difficulties in
getting the "fix" is that the needed legislation gets bundled with
non-related items -- such as extending unemployment insurance benefits --
that may have active opposition. Another problem is the sense that doctors
won't pull out of Medicare because it has traditionally been a main source of
income for them. But Doherty says that in many regions of the country doctors
don't worry about losing Medicare income because they have waiting lists of
non-Medicare patients.
Thus Doherty thinks it is very likely that many doctors will stop seeing new
Medicare patients if Congress fails to fix the physician payment problems. If
that happens, the AMA and other medical organizations predict that seniors
will be scrambling to find doctors. Medicare currently covers about 40
million elderly and disabled Americans, so any change in availability of
Medicare doctors could have a major impact on public health.
So the AMA is making a last-ditch attempt to force Congress to act by
launching a "Fix the Medicare mistake now" campaign. In addition to the
demonstration by delegates -- 50 of them wearing white lab coats while
another two dozen or so medical students wearing "Stop the Medicare mistake
now" T-shirts ran down the aisles leading chants -- the AMA is planning to
fly 10,000 or more doctors to Washington in January when Congress re-opens.
At the same time, the AMA is sponsoring an 800-number phone bank that allows
doctors or patients to connect immediately with the offices of senators and
representatives.
Moreover, if none of these lobbying efforts works, the AMA voted to go to
court to try to block additional cuts. AMA president elect, Donald Palmisano,
MD, sums up the situation this way: "An error was made and acknowledged. Now
it should be fixed. That is the American way."
SOURCES: American Medical Association meeting, New Orleans, Dec. 10, 2002 o
Yank Coble, MD, president, American Medical Association o Robert Doherty,
executive, American College of Physicians/American Society of Internal
Medicine o Donald Palmisano, MD, president-elect, American Medical
Association. © 2002 WebMD Inc. All rights reserved.
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DISEASES THAT STAY OUT OF SIGHT - By RICHARD M. COHEN The New York Times
Clean at last. The third colonoscopy was a charm. Two bouts of colon cancer
have ended, the curtain fallen. The houselights are up. Nobody has noticed
that I am still on stage. A chronic illness remains. Multiple sclerosis, my
longtime companion, has resumed its lowly position in the hierarchy of
suffering.
Chronic illness is driven from the stage by the acute threat. Its plotline is
tedious because action is slow and the story rarely varies. Attention spans
are short, and the drama can take years to play out. The brush with the
white-hot health crisis puts the chronic condition in its place. When
recovery from a life-threatening illness comes, that tired old standby
remains.
Turning tragedy to comedy is one option for coping. The morning I tried to
walk through a large mirror, thinking it was an entrance to a dining room,
entertained the boys behind the bakery counter. They knew nothing of my legal
blindness. I could write a guide to women's bathrooms I have accidentally
visited. Creeping, crawling illness takes me to the theater of the absurd.
Belly laughs sustain me.
There is a plodding quality to the slower struggle, one that frequently lasts
a lifetime. Chronic illness becomes prosaic, made clear by the contrast with
more exciting cancer, which wins in the ratings every time. Cancer brings a
sick glamour to its victim
Cancer survivors, and I am one, are wrapped in a cloak of tinsel that wears
thin soon enough. Life-threatening cancer tends to resolve itself. The
chronic condition is a journey without end. Many cancers today are treatable
and become chronic more than killer conditions, to be managed and endured and
survived.
Orphan afflictions become the long haul. They have little cachet but afflict
the many. These diseases are boring, not the stuff of movies and plays, so
usually they must rest outside the culture. Actresses succumb to unidentified
cancers regularly. The Big C is a proved box office winner. Remember the last
hot big-budget film about a man with crippling arthritis or a woman with
excruciating shingles? I don't.
One president endures M.S. in prime time and we learn little about the
disease. Talk of his shredding brain and a presidential blackout do not ring
true. No matter. M.S. is but a television device, meant to entertain. And a
public does not understand or appreciate the pace or pain of slow sickness.
Many diseases compromise the ability to eat and digest, to walk and speak and
a host of other functions. These conditions remain private because most of us
tire of talking, and no one can see the truth of another person's life.
My friend Don Gibson, a senior executive at the National Endowment for the
Humanities, left his job because of a digestive tract ailment, Crohn's
disease. Later, his open-heart surgery became the front-page story to friends
and acquaintances. No one has bothered to pay much attention to the Crohn's,
and everyone is quick to jump to conclusions. "It goes one of two ways," Don
says. "If you appear weak, people think you are useless. If you are
functioning, they think nothing is wrong." Neither is the case.
"If more of us died," says my pal Susan Thomases, who also has M.S., "people
might sit up and take notice." Susan, a lawyer and political strategist, gave
up a career in the law because of complications of M.S. "The disease is
slowly stealing from me. You know. We just live with it."
That, we do. We are left to battle insurance companies that resist the steady
costs of endless care and the employers who quickly tire of our bad days. We
are compromised. We do not want to be wretched refuse. We do not demand the
concern of others. Benign neglect would be just fine.
We become a hidden population. We are invisible, except to our bosses and
colleagues and others we engage. Folks do not want to know. Those who love us
do but cannot intercede.
I have trouble walking. Don can barely eat. Susan has memory problems. We
will live another day, but the routines that others take for granted will
challenge and occasionally conquer us. We can only acknowledge our difficult
journeys to ourselves in a whisper and move forward with humor and grace.
Copyright The New York Times Company
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May we all be a part of a healthier New Year with the hope that our skin will
be better, the joints won't be as swollen, the pain will be less, and our
bodies allow us a day or two, of just being normal again.
Good Health to All and Happy New Year
Jack Nicholas
Newsletter Editor
Cornishpro@...
Issue 2002 12/31/02-27