The Unknown Puts Offspring At Risk Of Sickle Cell Disease

Most Connecticut residents who carry a trait for sickle cell disease don’t know it, resulting in thousands of people unwittingly risking having a child born with the debilitating illness, according to sickle cell disease specialists. The reasons for this vary: there’s a lack of knowledge about results of newborn testing for the trait, parents don’t always convey test results to their children, gaps in state record keeping, and state records that identify people with the disease or trait only go back to 2012. Also, doctors typically only test for the trait when a patient requests it. And people often don’t know they can have the trait even when sickle cell disease isn’t in their family. Dr. Biree Andemariam, director of the New England Sickle Cell Institute at UConn Health, said physicians should include trait testing in routine exams. “It should be standard care,” she said.

Race, Economics, Environment Continue To Drive State’s Asthma Disparities

Kamyle Dunn used to sleep with her hand resting on her mother’s chest so she could feel it expand and contract and know that her mom hadn’t stopped breathing during the night. Dunn’s mother, Maria Cotto, has long had severe asthma. Dunn inherited the condition, though she has mostly grown out of it as an adult. Now, Dunn’s 12-year-old son also has severe asthma. “People kind of shrug it off as not that big of a deal,” said Dunn, who lives with her family in East Harford. “But I see what it’s done to my mother, and I see what it’s doing to my son, and what it has done to me.”

In Connecticut, 10.6% of children and 10.5% of adults have asthma, according to state data from 2019.  According to DataHaven’s 2021 Community Wellbeing survey, 12% of adults have asthma.

With 1 In 3 College Students Nationwide Facing Food Insecurity, Colleges Respond

Leslie Argueta is a 21-year-old first-generation college student at Goodwin University who plans to work with children and families in need. It’s a profession for which her own life experience has prepared her. When Argueta was 3, she emigrated from El Salvador with her family, settling in East Hartford. In Argueta’s first year of college, a car accident left her mother unable to work for a year, forcing the young college student to divide her time between her studies and hospital visits. “Me and my brother had to provide a little bit more for our family,” Argueta said.

Refugee Family Nurtures Culture In Hartford Community Garden

On a September weekday morning, Maaye May removes the lock and chain from one of two gates and enters the Niles Street Community Garden in Hartford. A 6-foot high, black-metal fence encloses the garden, which measures half the size of a football field. Within the gated oasis, the city surroundings slip away as bees, birds, flowers, fruits and vegetables begin to dominate the senses. May, 41, has an hour and a half to pick Thai chili peppers before driving to her part-time job washing dishes in East Hartford. She disappears into a green hedge, filling a small blue bucket with red and green chilies.

Tourette Syndrome Awareness Rises After Spike In Reported Tics And Billie Eilish’s Reveal Of Her Childhood Diagnosis

As a fifth grader growing up in Stratford, Bridget Phelan-Nelson used to shout the same string of obscenities every morning. “I would repeat it over and over on my walk to school so I wouldn’t say it at school,” recalls Phelan-Nelson, now 39. She also had multiple motor tics throughout middle school and high school, including a nose twitch that earned her the nickname “Bunny.”

Even though motor and vocal tics are telltale signs of Tourette syndrome, a neurological condition characterized by involuntary, repetitive motions and sounds, Phelan-Nelson wasn’t diagnosed with Tourette until she was 16 years old. “The thing most people don’t understand about Tourette is that you can hold it back for some time, but if you don’t do it, it’s going to hurt,” she said. “It’s like the itch you can’t reach at the bottom of your foot, and it pesters you until you scratch it.”

An August study by the Centers for Disease Control and Prevention (CDC) found that 1 in 50 school-age children have some type of tic disorder, including Tourette syndrome.

Access And Insurance Continue To Be Obstacles To Gender-Affirming Surgery in Connecticut

Since coming out as transgender in 2015, Lillian Maisfehlt has spent $10,000 on electrolysis and had voice and hormone therapy and breast construction. She also spent 10 days in Pennsylvania recovering from vaginoplasty, an operation that few surgeons perform for transgender women in Connecticut. Maisfehlt, 47, of Chester, said the pain, cost and occasional fights with her insurance company for reimbursement have been worth it. “Each step has made me feel a little bit more like myself,’’ Maisfehlt, a librarian at Gateway Community College in New Haven, said. “I’m Lillian.

Yale-Led Study Seeks To Transform Heart Disease Diagnoses In Women

Karen Lombardi, a school instructional coach, had just taken an unruly child out of a classroom when she felt severe chest pains. She drove to Yale New Haven Hospital, sweating profusely and hyperventilating, and was diagnosed with a heart attack. Five weeks later, she was back in the hospital with more chest pains. It was another four months before Lombardi, 61, learned the cause of her pain, received effective treatment and returned to active exercise. She considers herself lucky because many women with heart disease never get an accurate diagnosis.

Rise In Food Insecurity Drives Innovative Strategies

An abundance of healthy selections. Clearly marked nutrition labeling. The ability to pre-order. Fresh produce and meat. The 364,040 people in Connecticut who face hunger—one in every 10 residents—are increasingly likely to find these and other grocery store-like features at their local food pantries.

State Officials Nixed Health Information Network Computer Software They Spent $20M Developing

When Connecticut needed a computer system for its planned health information network, it came up with a novel solution. Instead of hiring consultants, the state tapped the University of Connecticut to develop the software for the network known as Connie. In 2017, the school created a new unit called UConn Analytics and Information Management Solutions—UConn AIMS for short—to do the work. Providing the computer architecture for Connie, an electronic system allowing health care professionals and entities like hospitals and labs to access patient information statewide, was supposed to be just the beginning for UConn AIMS, director Alan Fontes said. The Core Analytic Data System — CDAS for short — created for Connie had many other uses beyond health care, Fontes said.

Will New School Year Test New Haven Board’s Policy Aimed At Protecting Transgender And Nonconforming Students?

One by one, speakers lined up at a New Haven Board of Education meeting last fall to support a policy ensuring “the safety, comfort, and healthy development” of LGBTQ youths in school. Parents, teachers, advocates and students came forward, most with an anecdote and a plea: to protect children in New Haven schools who are bullied, unable to find safe bathrooms, and are referred to by the wrong pronouns—all because of their gender identity. Following the testimony, the school board unanimously approved the Transgender and Gender Non-Conforming Youth policy. Among other things, it grants students the right to change their name and gender identity on school records without parental permission; the right to be called by their preferred name and pronoun in school; the right to keep this information private without school staff telling parents or peers; access to gender-neutral bathrooms and more. By the end of the school year, what changes had the policy affected?