First-year M.D. students from the UCF College of Medicine received a heart-felt lesson this week on the challenges and hopeful determination of people living with Down Syndrome. As part of their HB1 module, the doctors-in-training spoke with families from the Down Syndrome Association of Central Florida, including the mother of a 7-month-old baby with the condition and a 22-year-old man who wants to be a worldwide advocate for people with disabilities.
Dr. Jane Gibson, professor of pathology, first invited patients with Down Syndrome and their families to the College of Medicine last year to help medical students understand the lives of people with the condition. The testimonies were so inspirational that Dr. Gibson organized another visit this year.
Amy Van Bergen, executive director of the association, talked to the students about the prejudices and myths associated with Down Syndrome and how improved medical care has increased the life expectancy of patients with the condition from only 9 years in 1924 to over 58 years today. Ms. Van Bergen’s son, Wils, has Down Syndrome but has defied many of society’s misperceptions by graduating from high school, attending college classes and living in an apartment at the University of North Florida. She described the devastation of parents who dream for nine months of having a “typical” baby and then learn that their child has been diagnosed with Down Syndrome. “Our role, at the Down Syndrome Association,” she said, “is to help give people the dream back.”
La Taasha Byrd, whose 7-month-old daughter has Down Syndrome, told the students that as doctors they must combine their scientific knowledge with a caring heart. “If you have no empathy,” she said, “your degree is worth nothing.”
via Down Sydrome Patients, Families Urge Empathy | UCF Today.
Even commonly prescribed drugs can be dangerous to older patients. A study that used a computer to screen prescriptions in hospitalized patients over age 65 reduced prescribing errors.
A new study, published online August 9 in Archives of Internal Medicine, analyzes data from more than three years of Beth Israel Deaconess Medical Center’s new CPOE program that provided warnings to health care workers ordering potentially harmful medicine for patients 65 years or older.
Some 60 percent of adverse drug events are initiated during the ordering step (as opposed to during administration), so minimizing poorly chosen drugs could go a long way in reducing these common medical errors, which occur during up to 40 percent of hospital stays, according to the paper.
via Observations: Seniors face lower risk of dangerous prescriptions with computerized hospital Rx system.
Dr. Marvin Anderson picked up a spindly legged lamb and draped it over his shoulders.
The doctor moved to Cedar around 2000; he lives on an organic farm with his wife Jill, sheep, goats, rabbits and miniature donkeys. More recently, Anderson launched a solo practice called Abba’s Place on the farm property. He deals with autism, environmental sensitivity and diagnostically challenging cases.
“(For) years, I went around with a stethoscope draped around my neck, and I’ve sort of replaced it with a lamb,” Anderson, an internist, said.
He is among several local health care providers who are incorporating animals into patient visits and treatment. The approaches range from local ranches devoted to therapeutic horseback riding and equine-assisted counseling to a visit with a bunny or donkey that Anderson can hold out “as a plum” for his young patients.
Connecting with animals is just one method Anderson can use when meeting with autistic children.
via Horses, donkeys, sheep help with autism » Life » Traverse City Record-Eagle.
Nobody looks forward to a dentist’s drill or giving a blood sample. But for people with special needs, these routine visits can be a cause for special terror. Often people with intellectual disabilities or autism get sedated or restrained so that they’ll stay still for a medical test. One Delaware mother came up with a better way.
via Taking the fear out of doctors’ visits | WHYY News and Information | WHYY.
Here’s a post from sfgate.com autism blogger Laura Shumaker on healthcare and adults with autism and other developmental disabilities. There’s an effort underway to develop a pilot program that would train San Francisco’s doctors to recognize health issues in this population. Read on to see why this is important:
Talia Schultz of San Francisco, who has autism and few words to tell people what’s wrong, was rushed to the ER with an infected gallbladder. Her sister Sarah, who had assumed 40-year-old Talia’s care a month before after their mother’s death, felt terrible.”I had no idea she was so sick!” she said.
Talia developed complications during an emergency gallbladder surgery, resulting in a more extensive surgery and a longer, very expensive, hospital stay.
“People with autism often don’t have typical pain behavior like grimacing or clutching their stomach,” says Dr. Clarissa Kripke, Director, Developmental Primary Care, Department of Family and Community Medicine at UCSF, “so it can be hard for others to recognize.”
Dr. Kripke sees situations like Talia’s at least daily.As children, the developmentally disabled can usually depend on parents and pediatricians to be their medical advocates. Yet when they grow into adulthood, there are few experienced physicians and other trained health care providers to take care of them. And there’s no system to ensure their care as their aging parents can no longer advocate for them.
via City Brights: Laura Shumaker : Autism: Healthcare beyond pediatrics.
Alzheimer’s patients and Alzheimer’s researchers spend time together at Northwestern University. Since the researchers don’t usually see patients, the program puts a face on the disease they are working to fight.
“This was the humanization of what can be a very nonhumanized process, looking at patient and disease rates,” a researcher told the Chicago News Cooperative.
When Richard Kluzak, a retired real estate developer in Naperville, traveled to London last spring with his wife to visit their daughter, the festive quickly morphed into the frustrating. The father, 72, did not recognize his daughter, 43.
Mr. Kluzak was diagnosed by an English neurologist as exhibiting early stage Alzheimer’s disease, not long after he’d been told back home that he was in good health.
His predicament explained his and his wife’s presence last week in a Chicago conference room whose stuffy, antiseptic air belied the pathos of a gathering marked by slivers of hope and ample uncertainty. For the first time, young Northwestern University neuroscience researchers left their labs to meet victims of a recently diagnosed disease that the scientists are struggling to understand.
via Giving Researchers a Face for Alzheimer’s / Chicago News Cooperative.