By the Associated Press in the New York Times:

Summer camps just for kids with chronic diseases are booming — places to learn about epilepsy or finally meet someone else with Tourette’s tics or slice open a cow’s heart to see what’s wrong with their own.

Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.

… ”How do you live well with a chronic condition? I believe in part, the power of being amongst your peers normalizes the experience,” explains Sandra Cushner-Weinstein, a social worker at Children’s National Medical Center who founded the hospital’s weeklong camps for five illnesses, and is studying the impact on campers.

From the Vancouver Sun:

After her daughter was barred from playing on a youth soccer team because she has Down syndrome, Abbe Gates of Vancouver started a team for children with special needs.

Sadie Gates and her teammates will take the field today at McKechnie elementary in Vancouver and play soccer. There are people in this world who still believe this is out of the ordinary. This is a shame.

Newsweek reexamines anxieties surrounding autism, a mystery with no known cause. The uncertainty is fueling an ongoing vaccine debate and harsh divisions within the autism community about how to view and treat the disorder. While some feel that autism is a disease in need of a cure, others are calling for neurodiversity, the idea that differences in human behavior should be celebrated.

“Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated,” says [Ari] Ne’eman, [president of the Autistic Self-Advocacy Network and a 20-year-old university student with Asperger's syndrome.]

And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne’eman’s fear? That autism will become like Down syndrome—essentially selected out of the population.

An accompanying chart of NIH research funding shows autism is expected to receive $128 million this year, or approximately $85.33 for each of the 1.5 million people diagnosed.

Of the conditions named, Down syndrome receives the smallest amount of research funds, both in the aggregate and on a per capita basis, with a total of $17 million or $48.57 per person diagnosed.

(more…)

From Medical News Today:

A new Harris survey reports that most baby boomers underestimate their risk of having a disability that would cause them to miss work for an extended period. The survey also found that baby boomers are unaware of the most common causes of disability and are not too concerned about their risk of becoming disabled.

The survey found that two-thirds of baby boomers think the chances of becoming disabled due to illness or injury are 20 percent or less. In reality, a worker has a 30 percent chance of losing three or more months of work due to disability before reaching retirement, according to the Social Security Administration.

One of the reasons baby boomers underestimate their risk is because they mistakenly believe that injuries cause more disabilities than illnesses. Research shows that the most common causes of disability are illnesses such as cancer, heart disease and diabetes.

In a letter to the editor of the Chicago Sun Times, Jim Radermacher calls for passage of the ADA Restoration Act. An excerpt:

Unfortunately, a series of Supreme Court decisions have narrowed who is covered by the [1990 ADA] so that many individuals with disabilities, including chronic illnesses like diabetes, epilepsy and cancer have found themselves no longer protected by the act because they don’t meet the very stringent definition of disability.

It is critical for Congress to pass the ADA Restoration Act, which will restore the basic rights of people with disabilities. Passage of this legislation harmonizes the ADA with other civil rights laws and enables people with disabilities to be judged just like everyone else — on their ability to do the job.

Radermacher is the Chicago Leadership Council Advocacy Chair of the American Diabetes Association.

See earlier posts here and here.

Experts counsel greater candor

From Newsweek:

Seventy-five percent of childhood cancer patients now survive, but two-thirds of them emerge with lifelong disabilities caused by the very treatments that saved their lives. Lingering cognitive delays, stunted development, difficulty concentrating and lack of stamina make it hard for them to get and hold jobs.

Many pediatric cancer survivors are now entering the workforce to find that they are more than four times as likely to fail in their job search, compared with their peers. Many are choosing to hide their disabilities from potential employers. Experts say that’s not a good strategy, and counsel potential employees to stress the strategies they have developed to work around their limitations.

From Sciencedaily.com:

Researchers at Texas A&M say a protein long suspected of playing a role in Down syndrome may hold the key to understanding breast cancer.

The observation comes as people with Down syndrome are benefiting from improved medical care and are living longer, healthier lives. Their longer lifespans have allowed scientists to note that people with Down syndrome are much less likely to get tumor-based cancers than other people. Most striking is the fact that women with Down syndrome are 10-25 times less likely to develop breast cancer. (more…)