Sex Ed and Autism

rachel-loftin-aartsBy Rachel Loftin, PhD

Although it is a crucial topic in health care, people are often reluctant to talk about the sex education needs of people with autism spectrum disorder.

While typically developing people learn a lot about sexuality and romantic relationships from their peers, teens with ASD are much less likely to have friends who talk about these topics. Many people with ASD do not pick up on unwritten rules for how to behave in social situations, and sexually charged interactions are particularly challenging to understand.

The social differences in ASD can limit the amount and quality of the sexuality information acquired and can make it challenging to understand the complex dynamics of intimate relationships.

When people with ASD unwittingly break social rules, they can put themselves at risk for victimization or may be misconstrued as sexually deviant or even predatory. Unfortunately, these situations sometimes result in legal action. Even when problem behaviors are not illegal, inappropriate sexual behaviors can limit employment and inclusion opportunities with individuals with ASD.

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Celebrating Relief From Stiff Person Syndrome

Sindanny-PizzaniBy Sindanny Pizzini

Stiff person syndrome is a neurological disease that only affects one in a million people. I am one of them. Even rarer, after nearly dying from my illness, I’m someone whose SPS is in remission, thanks to my doctors at Rush.

Stiff person syndrome gets its name from its chief symptoms, which are rigidity and/or spasticity of the skeletal muscles. The spasms result in unrelenting pain and typically disability. They even can cause broken bones.

The disease also can cause tremors, anxiety and a hyperexcitability of the muscles, known as the startle reflex. Emotional stress, a sudden, unexpected noise, or even a gentle touch may cause prolonged, often severe spasms or rigidity.

I began experiencing these symptoms in my early 30s. Because SPS is so rare, I suffered from the spasms and pain for five years without my illness being diagnosed.

Uncontrollable spasms

On Mother’s Day of 2012, I woke up with severe, uncontrollable spasms, and my 18-year old son called an ambulance. My community hospital didn’t know what to do and was ready to send me to hospice when a friend of mine intervened and arranged for my transfer to Rush University Medical Center.

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Shear Success for St. Baldrick’s Day at Rush

There’s a lot less hair around Rush University Medical Center after it hosted the annual St. Baldrick’s fundraising event last week. Nearly 50 students, faculty and staff members shed their locks for this year’s campaign, which raised about $28,000 for pediatric cancer research.

Fear Not the Colonoscopy

ccsslBy Thurston Hatcher

So if you haven’t heard already, March is Colorectal Cancer Awareness Month. And if you have, you’ve probably also heard a few reminders that it’s time to get that colonoscopy you’ve been dreading.

As an employee of a health care institution, I consider it my professional obligation to inform you that I’ve had one, and it ain’t that bad. Want to hear more? Perhaps not, but I’ll tell you anyway.

Colonoscopies generally are recommended for people age 50 and older, since they account for more than 90 percent of colorectal cancer cases. The procedure, which involves running a thin, tubelike instrument through the colon, helps doctors spot precancerous polyps so they can be removed before they turn into cancer.

As it happens, I wasn’t quite 50 when I had mine, but I had a few minor symptoms that might fall into the “cause for concern” category. My primary care doctor and gastroenterologist weren’t particularly alarmed, but they wanted to play it safe, and they figured I was close enough to my golden years to experience this rite of passage.

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A ‘Minuscule’ Sacrifice to Help Fight Pediatric Cancer

10506655_10152634864171441_3601000187279877683_oBy Tanya Friese

I consciously joined the Navy just before the first Gulf War because I had no children and did not see the need for those who had families to risk the consequences of service. Friends and colleagues came back diagnosed (as adults) with pediatric cancers. They did not receive medals, rather a diagnosis that typically resulted in an amputated limb.

I went back to school, as a disabled veteran, to become a nurse to care for those who often have little voice in their prognosis. In the pediatric ICU at Rush, I have cared for children dealing with the ramifications of a cancer diagnosis. I encounter these brave souls as I teach our nursing students in the community.

In the military, one obviously faces danger and encounters enemies both foreign and domestic — often on a daily basis. That is what we signed up for — what we pledged our loyalty to. Children (and their families, however defined) never enlisted in a diagnosis that begins with the big “C.”

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Shaving Heads to Fight Pediatric Cancer

St Baldricks Roving0593By Joanna Hui

In the United States, cancer is the leading cause of death by disease past infancy. One out of 285 U.S. children are diagnosed with cancer before they turn 20 years old. In 2015, about 10,380 children under the age of 15 in the United States alone will be diagnosed with cancer.

I don’t know about you, but for me that’s a heartbreaking statistic. It’s hard to think that so many families will be faced with the possible reality of losing their child before they have a chance to graduate high school, get married, or have children of their own.

Even if pediatric cancer patients successfully fight their cancer, two-thirds of them must endure long-term effects of treatment such as hearing loss, learning disabilities, infertility, heart disease, second cancers, and the list goes on.

Another unpalatable reality is the fact that less than 4 percent of funds for cancer research is allotted specifically toward pediatric cancer research.

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Why I Specialize in Adult Congenital Heart Disease

Julie Kovach, MDBy Julie Kovach, MD

“I’m a cardiologist who takes care of adults who were born with heart defects.”

This is what I tell anyone (patients, other physicians, friends or family members) who asks me “what kind of cardiology” I practice. My answer is almost always met with a quizzical look and a polite, “What?”

Everyone knows cardiologists who care for adults who have had heart attacks, or have high blood pressure, heart failure or heart rhythm problems (arrhythmias). These are common heart problems people face as they age.

But adults with congenital (present at birth) heart defects? What does that mean? How many of these patients could there possibly be out there? Don’t these folks just keep seeing the same cardiologist that they saw as a child?

So I tell them about Carrie*. When I first met Carrie, her husband brought her into my office in a wheelchair. A diminutive, 42-year-old woman dressed in a stylish suit, with tubing in her nose attached to an oxygen tank on her wheelchair, she smiled shyly and told me her story. Her husband stood behind her with tears in his eyes as she talked.

Carrie’s parents were told she had a heart murmur when she was nearly two years old and couldn’t keep up with the other kids while playing.

Fatigue, shortness of breath

As a young adult, Carrie remembers her mother telling her that doctors had suggested Carrie have heart surgery. Her parents were reluctant, however, because every child they’d heard of who had heart surgery died. Keep in mind, this was 40 years ago, a time when open heart surgery was a new specialty in its infancy.

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