The overriding goal of Steffen's Scleroderma Foundation's Interprofessional Events (IPE) is to educate emerging health care professionals and increase their involvement in studying Scleroderma. The students highlighted in this section are individuals who have led research related to Scleroderma as a result of attending Steffen's IPE events. The students featured here share one common goal, that is - to improve the quality of care for Scleroderma patients.
Giovanna Fichera, an occupational therapy doctoral student at Russell Sage College, has attended Steffen's Scleroderma IPE events in 2020 and 2022. As a result, she became a passionate advocate for the disease and is now conducting a research study at Albany Memorial Hand Center to test a novel splinting technique using 3D models for patients with Scleroderma. The study aims to determine the feasibility of a non-contact custom splint fabrication method for patients with chronic diseases suffering from hypersensitive skin or compromised skin integrity. Custom splinting by occupational therapists involves molding low-temperature thermoplastic material directly on patients' skin; however, skin sensitivity is a contraindication for splint fabrication. Follow along her research journey on Instagram at anything_ot , as she discovers if this novel splinting method improves pain, skin protection, sleep, ability to complete daily activities, and maintains range of motion of the fingers and wrist.
Dr. Shapiro is currently working with a third-year Albany Medical College student, Samantha Sattler, on a review of gastrointestinal manifestations of Degos disease. An abstract based on this work was accepted for a poster presentation at this year’s (virtual) meeting of the American College of Gastroenterology. The goal of this project is to provide information to patients and providers on aspects of gastrointestinal Degos, including pathology, demographics, the diagnostic process, bowel visualization, complications, and current treatments. They also hope to interview patients living with gastrointestinal Degos to learn more about symptoms at disease onset, daily challenges, lifestyle changes, and personal insights that may not be apparent to physicians and other care providers. Dr. Shapiro and Samantha have more recently begun a project focused on laparoscopic imaging of gastrointestinal Scleroderma. There is a current gap in medical knowledge regarding the appearance and pathology of scleroderma bowel disease. Working with Dr. Frech of the University of Utah School of Medicine, the team hopes to develop a protocol which could be employed at the time of elective laparoscopic surgeries to further characterize the disease process.
After attending the 2019 annual IPE event, a group of four Russell Sage College Occupational Therapy graduate students realized there was a lack of OT research addressing splinting of the Scleroderma hand. The last publication they found on the subject was from 1987. They are currently conducting a pilot study on a splint fabrication process that may slow down the progression of hand contractures often affiliated with Diffuse Scleroderma. The past clinical problem has been poor tolerance of corrective splinting in the Scleroderma hand, permitting deforming forces to go unchecked. This often results in pain and loss of function for the person over time. The Sage students collaborated with PVA, a 3D printing company in Cohoes, NY, and Steffens. Study methods were modified due to restrictions in place for COVID-19. PVA printed models of forearms and hands from 4 healthy subjects. Celeste Freeman, OTR/L,CHT, fabricated custom resting splints on the 3D models. Fit and comfort of 4 different materials will be assessed by the subjects. The goal of this pilot study is to determine the most comfortable material for overnight wear and to determine methods for splinting on the 3D models of forearms and hands, thus reducing splint fabrication risk to individuals with Scleroderma. The intent is to use this data for the next phase of research, applied to individuals with Scleroderma, once COVID-19 restrictions are lifted.