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Dr. Kathryn Torok: Helping Kids Live Better Lives with Scleroderma

Dr. Kathryn Torok is director of the Pediatric Scleroderma Clinic at Children's Hospital of Pittsburgh, part of the University of Pittsburgh Medical Center Scleroderma Center. She also is an assistant professor of Pediatrics, University of Pittsburgh School of Medicine, Department of Pediatrics, Division of Rheumatology.

Dr. Torok and Courtney
Patient Courtney Shatley and Dr. Torok stop for a photo at the infusion clinic at Children’s Hospital of Pittsburgh. Courtney was featured in the Summer 2011 issue of “Scleroderma Voice.”

Dr. Kathryn “Cassie” Torok is the director of the Pediatric Scleroderma Clinic at Children’s Hospital of Pittsburgh, which is part of the University of Pittsburgh Scleroderma Center at the University of Pittsburgh Medical Center. She juggles seeing patients in the clinic, conducting her own research to help develop more effective therapies in localized scleroderma, and mentoring the next generation of pediatric rheumatologists at the University of Pittsburgh School of Medicine. She is passionate about helping children who have rheumatic conditions, like scleroderma.

Her desire to help young patients with uncommon diagnoses started when she was in high school. Back then, she had developed drug-induced lupus, an autoimmune disorder similar to systemic lupus erythematosus (SLE) but caused by the immune system’s overreaction to a medication. In her case, a common acne drug ignited the condition. Drug-induced lupus caused Dr. Torok to experience arthritis, chest pain and other symptoms for almost six years. This experience strengthened her desire to become a doctor and directed her interest toward rheumatology. When she made it to medical school, she chose her first elective rotation to be pediatric rheumatology and she knew early on that this was the perfect match for her. “The first day I was in the clinic, I knew this w as for me. I saw patients with various conditions that I hadn’t even heard of,” she recalled.

In 2004, Dr. Torok graduated from the College of Medicine at Penn State University in Hershey, PA. She went on to finish her pediatric residency and rheumatology fellowship at the University of Pittsburgh. Her pediatric rheumatology clinical mentor during training was Dr. Thaschawee Arkachaisri, then director of the Pediatric Scleroderma Clinic at Children’s Hospital of Pittsburgh. Along with additional clinical mentorship from Dr. Thomas A. Medsger, at the University of Pittsburgh, she learned how to use and also helped validate clinical assessment tools of disease activity and damage used in localized scleroderma. Working with Dr. Medsger, she also learned more about the systemic form of the disease, which isn’t as common in children.

Dr. Torok and Jewel
Dr. Torok, along with one of her teenage patients Jewel, during a clinic visit.

When Dr. Arkachaisri left the center to return to Singapore in 2009, Dr. Torok took over as director for the Pediatric Scleroderma Clinic at Children’s Hospital of Pittsburgh, which included the responsibility of being the principal investigator of the National Registry of Childhood Onset Scleroderma (NRCOS). Originally established by Dr. Medsger in 2002, the registry includes data on more than 350 children with scleroderma. It’s one of the largest clinical and serological data repositories in the country, which houses specific clinical information, DNA, biopsies, blood samples and other important data. This registry provides a valuable resource for clinicians throughout the nation to help answer their questions regarding pediatric localized and systemic scleroderma.

Dr. Torok has also taken the initiative to expand this registry and her laboratory at the University of Pittsburgh, which serves as the biorepository for the juvenile Localized Scleroderma Consensus Treatment Plan (jLS CTP) study of the Childhood Arthritis and Rheumatism Research Alliance (CARRA).The jLS CTP compares methotrexate in combination with different corticosteroids regimens. The pilot study is being conducted at 10 centers in the U.S. and Canada, and is looking to enroll patients. The goal is to see what treatments work the best in controlling the disease while minimizing side effects. “Right now, steroids and methotrexate are used most commonly and they are effective in most patients, but they have a lot of side effects, such as weight gain and nausea. We want to identify immune mediators to target scleroderma in different ways,” she said. “Medications like Enbrel® and Humira® have been ground-breaking for rheumatoid arthritis and reducing side effects. The drive behind my current research is to find something similar to help those affected by localized scleroderma.”

Dr. Torok dedicates one day each week to her scleroderma clinic and its patients, who travel from all parts of the country. She also arranges combined visits for those with linear scleroderma of the head, en coup de sabre/Parry Romberg Syndrome, at the “Parry Romberg/Linear Scleroderma Clinic,” which involves a visit with craniofacial plastic surgery, dental, orthodontics, ophthalmology and rheumatology services. She really enjoys both interacting with her patients as well as teaching medical students, residents and fellows during these clinical visits. In addition to her clinical work she also has dedicated time to bench, translational and clinical research and is currently the main mentor of two pediatric rheumatology fellows’ research projects. One of which is focusing on the quality of life for patients with localized scleroderma with detailed focus group sessions in the hopes of developing a specialized quality of life questionnaire that can be used to truly reflect how localized scleroderma affects patients.

In addition to juggling three young children of her own, Dr. Torok also finds time to commit to supporting the work of patient organizations. She is a board member of the local and regional Arthritis Foundation and assists the Scleroderma Foundation with educational and medical programming. Additionally, Dr. Torok has collaborated for several years with Dr. Suzanne Li, M.D., Ph.D., of Joseph M. Sanzari Children’s Hospital in New Jersey. Together, they lead the pediatric localized scleroderma group within CARRA. Dr. Torok and Dr. Li have a strong desire to accurately address disease activity clinical parameters and associate them with potential biomarkers to better identify active disease and response to therapy.

Dr. Torok and Caitlyn
In this photo, Dr. Torok with one of her patients, Caitlyn, who visits the clinic several times each year from California for linear scleroderma treatments. (She is also shown on the cover in a photo taken in 2011.)

“There’s a small window for treatment when the disease is still very active and before too much damage has taken place, and it’s a challenge to get the word out. In addition, regarding children, they are still in a state of growth and development and the onset of scleroderma during this time can lead to a fair amount of disability due to both cosmetic and orthopedic abnormalities. In the pediatric rheumatology field, we’re aware of the issue but it’s just not out there in the rest of the community,” said Dr. Torok. “Groups, like CARRA and the localized scleroderma registry (NRCOS), capture important patient information, including the time between disease onset and diagnosis. I feel that these groups help children and parents better manage the disease by getting patients into treatment, including medications as well as physical and occupational therapy, faster so that there’s less damage and musculoskeletal problems. It’s all about prompt diagnosis and referral,” she said.

“Understanding the diagnosis and a vailable resources are key to help families manage and cope with scleroderma. I often direct families to the Scleroderma Foundation as well as work closely with my social worker to see if we can ‘pair’ up patients that have similar subtypes of scleroderma and are the same age,” she said. “The school age and t eenage children really like to befriend someone going through the same thing and the parents find it very helpful to speak with other parents in the same situation. Also, I encourage my patients and their families to attend opportunities such as the Scleroderma Foundation’s national conference so that parents and children can meet others in similar situations and learn from each other.”

Dr. Carol Feghali-Bostwick, of the Medical University of South Carolina, collaborated with Dr. Torok on a research project and had high praise for her dedication to the field. “If I could clone Cassie, I would. She is motivated, hardworking and very passionate about her research and her patients whom she often refers to as 'my kids'. Cassie's dedication and work ethic are enhanced by a positive and extremely pleasant personality,” she said.

 

This story originally appeared in the Summer 2014 issue of "Scleroderma Voice." Become a member of the Scleroderma Foundation today to receive this publication.

 

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