Downsyndrome.com

She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so I thought. New in town, I had come to the park in hopes of finding some friends for myself and my little ones.

Her eyes flicked over to where my daughter sat, shovel gripped in a tiny fist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. “Isn’t it a shame,” she said, an eyebrow cocked in Margaret’s direction, “that everyone doesn’t get amnio?”

It’s been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians and Gynecologists this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox — uninformed, judgmental and unable to entertain the possibility that people with disabilities have something to offer.

The ACOG news release notes that the recommendations are based on consistent scientific evidence and will allow obstetricians and gynecologists to best meet their patients’ needs. Until now, women 35 or older were automatically offered genetic testing for Down syndrome; under the new guidelines, less invasive and earlier screening options will be extended much more broadly.

What’s gone undiscussed in the news coverage of the guidelines seems to be a general assumption that reasonable people would want to screen for Down syndrome. And since nothing can be done to mitigate the effects of an extra 21st chromosome in utero, the further assumption is that people would be reasonable to terminate pregnancies that are so diagnosed.

Certainly, these recommendations will have the effect of accelerating a weeding out of fetuses with Down syndrome that is already well under way. There’s an estimated 85 to 90 percent termination rate among prenatally diagnosed cases of Down syndrome in this country. With universal screening, the number of terminations will rise. Early screening will allow people to terminate earlier in their pregnancies when it’s safer and when their medical status may be unapparent to friends and colleagues.

I understand that some people very much want this, but I have to ask: Why? Among the reasons, I believe, is a fundamental societal misperception that the lives of people with intellectual disabilities have no value — that less able somehow equates to less worthy. Like the woman in the park, we’re assigning one trait more importance than all the others and making critical decisions based on that judgment.

In so doing, we’re causing a broad social effect. We’re embarking on the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.

Much of what people think they know about intellectual disabilities is inaccurate and remains rooted in stigma and opinions that were formed when institutionalization was routine. In fact, this wave of terminations and recommendations comes as people with Down syndrome and other intellectual disabilities are better educated and leading longer, healthier and more productive lives than ever.

Nowhere in the fine print of the ACOG recommendations are these misconceptions or the advances of recent years recognized. Perhaps this is not surprising: OB-GYNs concern themselves primarily with mothers and well babies, not people with intellectual disabilities. But it’s frightening, too, when you consider the millions of lives affected by their guidance, explicit or otherwise.

Federally funded research has found that physicians have lower expectations for people with intellectual disabilities than do other professionals. Some 81 percent of medical students polled by Special Olympics in 2005 said that they are “not getting any clinical training” about people with intellectual disabilities. The Hastings Center found that 80 percent of genetics professionals polled said they personally would terminate a pregnancy involving Down syndrome. These are the people advising pregnant women in the harried days when the clock is ticking.

Here’s my fervent hope: that calls for universal prenatal screening will be joined by an equally strong call for providing comprehensive information to prospective parents, not just about the tests but also about the rich and rewarding lives that are possible with disabilities. If physicians and genetics professionals are willing to learn from people with disabilities and their families, they can disseminate the nuanced, compassionate message at the core of diversity and human rights: All people have value and dignity and are worthy of celebration.

Plastic shovels no longer captivate Margaret. She’s more interested in her school roommates, her part-time job, the Red Sox and, at least recently, wrestling on TV. She knows how to hold an audience and how to bring down the house with a one-liner. And, like most of my relatives, she knows how to be an absolute pill some of the time. Such is life.

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AS AN advertising pitch, I can’t see it going down well with America’s car buyers. Changfeng, the state-controlled Chinese car maker which hopes to start shipping its SUVs to the US next year, unveiled its latest model with a so-bad-it’s-hilarious video at the Detroit Motor Show.

Amid the Eighties-quality graphics and a spot of homage to Chairman Mao, the video’s centrepiece was military parade footage proudly presenting the Liebao as the “state car for leaders’ inspections”. Little call for that in the Midwest, I fear.

But titter ye not. Ten years ago, this company was No 7319 Factory of the Chinese People’s Liberation Army, and it is not joking when it says it has “realised leapfrogging growth”. Li Jianxin, the first Chinese car boss to unveil a new model at this show, may have provided comic relief in Motown, but his presence underlined why the mood is so sombre in the American car industry.

It’s that g-force again: globalisation. The old, august American car makers face more competition than ever. International rivals have more of their manufacturing in low-cost countries and assemble their US cars using a younger, cheaper, Southern workforce. This year is the 50th anniversary of the first Japanese attempt to crack the US, when Toyota began importing the Crown. That vehicle generated as many gags as the Liebao, but now most American citizens reckon the Japanese make the best cars.

By 2010, Toyota will be the world’s biggest car maker, surpassing General Motors, owner of Chevrolet, Cadillac and Buick. This blow will be felt most keenly here in Motor City, home to the Big Three - GM, Ford and Chrysler.

Actually, I’ve got to stop calling them the Big Three. Chrysler, which merged with Daimler-Benz in 1998, was always a distant third and last year Toyota zoomed past it in number of cars sold in the US. The Japanese giant will almost certainly overtake Ford in the US this year, too.

In 2006, a thumping 70,000 US car company workers agreed to take redundancy. Factories are closing across the US. And still the companies are losing money and market share, and losing out in the technology race. It’s a deathly spiral. The US car companies have barely half the home market, compared with almost two-thirds at the start of the decade. Toyota has the top-selling car, the Camry, and hybrid, the Prius. Now that fuel economy has moved up buyers’ priorities, the US car makers are further disadvantaged.

The outlines of a recovery plan are clear. Unions are willing to relinquish some pay and benefits. The car makers are collaborating on technologies. And lobbying might yield government help.

But the threats to a recovery are just as clear and more plausible. Toyota’s stand in Detroit gave pride of place to its new Tundra pick-up truck, moving on to the last piece of profitable turf still dominated by US car makers. A strike or a bad sales year could knock GM or Ford to the point of bankruptcy. And all the while, the Japanese are rampant, the Koreans are building a presence, and the Chinese… well, they are real-ising leapfrogging growth.

Copyright 2007 Independent Newspapers UK Limited
Provided by ProQuest Information and Learning Company. All rights Reserved.

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What is patellofemoral pain syndrome?

Patellofemoral (pa-tell-oh-FEE-mor-al) pain syndrome (or PFPS) is pain at the front of your knee. It may happen when the kneecap (or patella) moves differently than usual.

What are the symptoms of PFPS?

If you have PFPS, you may feel pain behind or underneath your kneecap. The pain may be in one knee or in both. It may get worse if you run, go up or down stairs, or sit with your knee bent for a long time (like in a movie theater or when driving a car).

How is it treated?

It depends on the patient. Usually, putting ice on your knee, changing your activities, and following a physical therapy program works best. This type of program may include exercises to make your muscles stronger and more flexible. Taping the knee or using shoe insoles can be helpful for some people. It may take weeks or months of treatment for the pain to go away.

Will I need surgery?

Most people with PFPS do not need to have surgery.

Will the pain come back?

PFPS can come back. Talk to your doctor about what might have caused the pain so that you can stop it from happening again. Don’t change your activities suddenly. Keep your knee joint strong and flexible. Replace your running shoes regularly (about every 250 to 500 miles of use) so they don’t get worn out.

COPYRIGHT 2007 American Academy of Family Physicians
COPYRIGHT 2008 Gale, Cengage Learning

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BASINGSTOKE, England, January 11 /PRNewswire/ — The European Commission has granted marketing authorisation for the use of idursulfase (Elaprase(R)), for the long-term treatment of patients with Hunter syndrome[1]. Idursulfase, marketed by Shire Human Genetics Therapies, is the first and only enzyme replacement treatment for people suffering from Hunter syndrome (Mucopolysaccharidosis II) since this condition was identified 100 years ago.

Idursulfase, which is delivered by weekly infusions, replaces the deficient or missing enzyme, iduronate-2-sulfatase (I2S), that people …

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STANFORD, Calif. — A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.

Jose Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir — an antiviral often used in treating diseases caused by human herpes viruses — to treat a small number of CFS patients.

The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.

"This study is small and preliminary, but potentially very important," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. "If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness."

Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients.

Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as "yuppie flu," since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it’s most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.

More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely — resulting in chronic, waxing and waning debilitation for years.

Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years.

When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya’s patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause.

Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. "I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes," said Montoya.

Within four weeks, the patient’s lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. "We were really shocked by this," recalled Montoya.

Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.

Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.

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Bruni M. Bethesda, MD 20817, Woodbine House, Inc, 2006, paperback, 241 pp, illus, ISBN: 978-1-890627-67-4, $19.95.

This is one book in a series, "Topics in Down Syndrome," published by Woodbine House. The second edition, similar to the first edition, is well organized and easy to read. It was written to serve as a practical resource for both professionals and parents. Professionals can use the information to explain to parents what a child with Down syndrome can do at different stages of development, and to provide parents with activities to do at home that will help …

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THE U.S. OIL INDUSTRY’S refining profits remain at record or near-record levels. Two consecutive years of soaring prices in the spring and summer of 2006 and 2007 have equaled the price effects of 2005’s Hurricane Katrina, without any natural disaster.

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What is starkly apparent is that while rising prices of crude oil lead to gas price hikes, the price at the pump in the United States no longer follows downward changes in the price of crude oil.

Oil companies and their refineries have failed to raise gasoline inventories during the off-season. Longer than …

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Byline: Cathy O’Leary

Jan 01, 2007 (The West Australian - ABIX via COMTEX) — New US guidelines recommend testing of all pregnant women for Down syndrome. The American College of Obstetricians & Gynecologists says a new and less invasive test should be routinely offered to all pregnant women. The test involves a blood sample and an ultrasound in the first 13 weeks of pregnancy. The present guidelines of the Royal Australian & New Zealand College of Obstetricians & Gynaecologists recommend that the …

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