Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

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From the Baltimore Sun:

Public health experts say the nation needs to set up national health registries, similar to those now in place for cancer, to track trends and focus research on a long list of conditions. Among them are Alzheimer’s disease, autism, multiple sclerosis, asthma and heart disease.

Registries for birth defects are in place in only 15 states, according to the CDC. Cancer registries contain information on the age, race, gender, county of residence, diagnosis, treatment and outcome for patients across the country.

Scientists say the cancer registries have been valuable in learning the causes and trends of cancer, and in developing prevention and treatment strategies. “We also can have those benefits for other diseases,” said Thomas A. Burke, an epidemiologist and professor in the Johns Hopkins University’s Bloomberg School of Public Health. “It takes political will, and it does take funding, but there’s an awful lot of interest there.”

From CNN, Los Angeles Times, Reuters:

Actress Terri Garr, the Oscar-nominated star of movies like “Tootsie,” “Young Frankenstein” and “Close Encounters of the Third Kind,” says she was “shunned” by many people after her diagnosis with multiple sclerosis almost ten years ago. Then, two years ago, she had a brain aneurysm.

Now Garr’s back on the big screen with a performance in the just-released “Expired,” in which she plays twins. She’s got a lot to say about her life as an actress with disabilities.

“When you hear the word ‘disabled,’ people immediately think about people who can’t walk or talk or do everything that people take for granted,” Garr said in a recent interview. “Now, I take nothing for granted. But I find the real disability is people who can’t find joy in life and are bitter.”

… Garr wrote about her experiences with MS in the 2005 book “Speedbumps” (her original title for it was “Does This Wheelchair Make Me Look Fat?”) and worked tirelessly for the National MS Society, touring the country and talking about living with MS.

(Los Angeles Times photo)

From CNN:

Poses are modified for people with limited range of motion or balance issues. Instructors say regular yoga can increase joint mobility. People with multiple sclerosis, Parkinson’s disease, stroke and arthritis are mentioned.

PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science — or just a MySpace for the afflicted?

Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.

… PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications.

… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope — and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

From Fox News:

Janice Dean, a weather forecaster on the Fox News Channel, was diagnosed with multiple sclerosis two and a half years ago. She said she chose to discuss her condition this week because it is National MS Awareness Week.

She believes that with a positive attitude she and others can beat this disease.

“I really don’t want to be the poster girl for this disease,” she said. “But I do want others with it to know that they are not alone. There are others out there that are just like them going through the same thing. And my life is fairly normal. I just have a few little obstacles that I have to deal with.”

From the Dallas Morning News:

For people living with diabetes, multiple sclerosis and other chronic conditions, blogs are increasingly providing support and information. Experts say blogging can be a useful tool for grappling with medical conditions and building connections with other people with shared experiences. At the same time, caution is urged: not all information out there is good information, and posters’ privacy can’t be assured.