Tai Jordan, right, and his mother Carmen Jordan offer tips for how the healthcare system can accommodate transgender youth.
A clinician stepping out and calling a name into a lobby full of waiting patients may seem like no big deal, but for a transgender youth patient waiting for an appointment, it can cut like a knife.
“When a clinician walks into a room, the birth name on your chart is the first thing they call out,” explained Tai Jordan, a 17-year-old transgender youth. Tai, whose birth name is ‘Tairah,’ was born female, but identifies as male. “If you’re not out yet, or you pass as the gender you identify with and use a different name, the clinician has inadvertently outed you in a public space where you should feel safe.”
Seattle Children’s researchers Dr. David Breland and Dr. Yolanda Evans want to better understand the issues that transgender patients and their families face in healthcare. They have launched a survey for parents of transgender youth patients with the goal of better understanding healthcare experiences and barriers. Families who are interested in participating in this research study can send an email by clicking here or call 206-884-1433 to learn more. The survey takes about 15 minutes to complete and each participant receives a $10 gift card. Read full post »
Dr. David Rawlings, left, and Dr. Andrew Scharenberg, right, have pioneered a gene editing technique in T cells that can kill and resist HIV.
Dr. David Rawlings and Dr. Andrew Scharenberg, researchers at the Center for Immunity and Immunotherapy at Seattle Children’s Research Institute, published a paper today in Science Translational Medicine that reveals a groundbreaking approach to engineering human T cells, which are crucial for fighting infection and show promise in treating autoimmune disorders, blood diseases and some types of cancer. Using HIV as a model for this new gene editing technique, they found that T cells could be engineered to resist HIV infection and simultaneously kill HIV-infected T cells or B cell tumors.
On the Pulse sat down with Dr. Rawlings to discuss this major discovery in gene editing and learn how it could help scientists working to find cures for HIV, cancer and other diseases. Read full post »
Isabelle Thomelin hopes that by participating in a clinical research study for her severe peanut and tree nut allergies, she can help researchers find effective therapies.
Families, patients and providers can now browse our clinical research studies at the newly-launched Seattle Children’s Research Studies and Clinical Trials Web Hub.
When a family is in a rush to get dinner on the table, maybe mom or dad will order pizza, grab healthy greens from the salad bar or hustle home with prepared food from the deli. But when the Thomelin family is considering dinner, they have to think about every single ingredient they bring into the kitchen. Their youngest daughter, 9-year-old Isabelle Thomelin, has severe allergies to peanuts and tree nuts.
Isabelle is enrolled in a clinical study at Seattle Children’s that may reduce her allergic reactions. The study will test an immunotherapy technique and a designer medicine to see if they allow Isabelle’s body to safely tolerate peanuts and tree nuts in gradually increased doses. Read full post »
Nick Olson, 7, comes to Seattle Children’s for Duchenne muscular dystrophy treatment.
Tiny, sleek zebrafish could hold the key for how we treat muscular dystrophy in the future. Dr. Lisa Maves, a researcher at Seattle Children’s Research Institute, has received a grant from the National Institutes of Health to study drug combinations in zebrafish for Duchenne muscular dystrophy. It’s one of the most common forms of muscular dystrophy and affects males almost exclusively. The condition, caused by a genetic disorder of the X chromosome, gradually weakens the body’s muscles and occurs in about 1 out of every 3,500 boys.
Nick Olson is 7 years old—a redhead with a toothy smile and a stuffed animal named Puppyroni by his side. Nick has Duchenne muscular dystrophy. What does a little boy like Nick have in common with a zebrafish swimming in a tank? Genes. Zebrafish are perfect subjects for muscular dystrophy research because the same genes that caused muscular dystrophy in Nick cause it in zebrafish, too. Read full post »
Marijuana legalization has led some college-age young adults to believe marijuana is safe to use now that it’s legal in some states.
A new study from Seattle Children’s Research Institute (SCRI) shows that marijuana legalization has led some college-age young adults to believe marijuana must be safe to use now that it’s legal in some states. That’s a dangerous assumption says the study’s lead author, Dr. Megan Moreno, a Principal Investigator who studies social media and adolescent health at the Center for Child Health, Behavior and Development at SCRI.
“Marijuana interferes with brain development, and that includes young adults in college,” said Moreno. “About 5% of survey participants expressed that government legalization of marijuana must mean it is safe to use. That might seem like a small percentage. But when magnified on a larger population, it could be a substantial number of young adults who have that perception.”
Read full post »
Bailey Moser, age 5
Neurosurgeons at Seattle Children’s Hospital have long suspected that epilepsy patients who have surgery earlier in life have better outcomes than those that wait. Now they have data to confirm their instincts.
In a study recently published in the Journal of Neurosurgery Pediatrics, lead author Dr. Hillary Shurtleff, neuropsychologist and investigator at Seattle Children’s Research Institute Center for Integrative Brain Research, found that early surgical treatment of focal seizures – those that affect only one area of the brain – in preschool aged children is highly beneficial. The results showed that surgery can reduce the amount of seizures and the number of medications patients are on while helping improve intelligence outcomes. Read full post »
Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.
Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.
A new study published today in Cancer and led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma. Read full post »
In the doctor’s office, words matter. The content of a conversation between doctor, patient and parent can change the course of treatment. Shared decision-making has emerged as the dominant model in medicine for these conversations. There is even evidence it can improve patient outcomes. But should doctors reconsider its constant use? Shared decision-making and its boundaries will be the subject of a discussion led by Dr. Douglas Opel at the 11th annual Pediatric Bioethics Conference, which is being held July 24-25 at the Bell Harbor International Conference Center in Seattle.
Opel, a faculty member at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s and a general pediatrician at Seattle Children’s, sat down with On the Pulse to discuss the concept of shared decision-making. Read full post »
The attendees of the summer scholars program visiting Pike Place Market.
Most teens aren’t keen on spending summer days in camp; they’ve outgrown sleeping bags and roasting s’mores. That’s why the Social Media and Adolescent Health Research Team (SMAHRT) at Seattle Children’s Research Institute is hosting this week a summer scholars program designed to help teens create their own research projects on teen health and media.
Led by Dr. Megan Moreno, principal investigator of the SMAHRT team, the summer scholars program will ask 25 teens ages 16-18, mostly from the Kent and Highline school districts, to help design and answer their own research questions such as:
- How does Instagram affect adolescents’ well-being?
- Can you be addicted to the Internet?
- Does Facebook influence health behaviors for college students?
The students will also learn about different types of research that seek to improve child and adolescent health while experiencing different paths to a career in research or healthcare. Read full post »
Esmee (left) and Willa (right) pose for a photo.
A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic hepatitis B (HBV).
Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!
She filed the paperwork for adoption and waited patiently to hear back. Read full post »