The weekend of April 27th and 28th, team leader Dr. Vanessa Malcarne and her trainees Shadi Gholizadeh, Sarah Mills, Rina Sobel and Tamara Strohauer hosted the SPIN Body Image Team Meeting in San Diego. Because patient representative Karen Gottesman was unable to attend this meeting, a pre-meeting took place earlier in the week to gain more insight into patients’ perspectives on the SPIN Body Image intervention. Furthermore, the general framework of the intervention was discussed, as well as examples of engaging virtual elements.
Two representatives of the Center for Appearance Research (CAR) in Bristol, UK were also invited to participate in the meeting. Drs. Diana Harcourt and Heidi Williamson are internationally known for their research on appearance-related issues, and have considerable experience with the development of online interventions to support people living with visible differences. Together with the other SPIN team members, Drs. Maureen Mayes and Shervin Assassi, Lisa Jewett, Drs. Brett Thombs and Linda Kwakkenbos, it was discussed how elements from these general interventions could be used and adapted for people with scleroderma. Going forward in developing the SPIN Body Image intervention, the team will be collaborating closely with the CAR experts. In addition, men and women living with scleroderma will be interviewed about their experiences in coping with visible differences, and which issues specific to scleroderma should be taken into account in developing the SPIN intervention.
In addition to the serious and hard work, the team also took some time to visit the beach and was lucky enough to have a unique Southern Californian experience: a so-called ‘Grunion Run.’ California grunion are small silvery fish about 5 to 6 inches long found only along the coast of southern California and northern Baja California. Unlike other fish, grunion come out of the water completely to lay their eggs in the wet sand of the beach, which only happens a couple of nights per year. A quite interesting experience for the team!