2019 Forum Issue 1

Cutaneous Lymphoma Foundation 2019 Issue 1 THE INFLUENCE OF EMOTIONAL SUPPORT ON CUTANEOUS LYMPHOMAS-RELATED STRESS As a rare disease, cutaneous lymphoma can often be isolating and can leave patients feeling like they are the only one suffering from this disease. Patients can be left deeply stressed from their diagnosis and seeking a sense of understanding from others going through a similar journey. Human nature drives our need to connect and relate to others through networking and sharing mutual experiences; patients may find a sense of emotional healing and gain valuable support. While there aren’t many disease-specific studies, stress relief may also be a cathartic side effect of emotional connection. Studies from the United Kingdom indicate that cutaneous T-cell lymphomas (CTCLs) impact patients’ quality of life including employment, leisure activities and relationships. Patients with CTCLs are frequently concerned about delays in diagnosis, disease progression, disease being serious, and worried about dying. Depression and anxiety are common, especially in patients with advanced disease stages. Family members that are caregivers also experience multiple demands from the disease and their specific needs remain to be investigated. (Beynon 2014, 2015, Selman 2014) One study that interviewed 19 subjects with CTCLs, (Benynon 2015) found that despite the symptom burden and disease impact on patients’ quality of life, participants described effec- tive coping strategies such as drawing on social support, maintaining normal lives and becoming well informed about CTCLs. Another study described that patients participating in an online support group felt supported and better informed about new and current treatments. (Lamberg L. 1997). While there is a need to further investigate the role of emotional support in cutaneous lymphomas, these small studies suggest that emotional support can lead to stress relief. “I believe that the importance of emotional support through peer understanding is immeasur- able and something that we as medical providers, cannot offer within the walls of our offices. As a medical provider, I encourage my patients to take advantage of opportunities that allow them to connect with others to bring mutual support. Networking groups, patient support groups, social From the President and the Chief Executive Officer. ............................................................. 3 Our Journey with Cutaneous Lymphoma......... 4 Skincare Corner Q&A......................................... 6 Welcome Tasha Williams............................... 8 2-Day Patient Conference............................. 10 Upcoming Events............................................ 11 Facebook Live Events .......................Backcover ................................................................12 Emotional Support...continued on page 5 Cutaneous Lymphoma Foundation For illustrative purposes only.

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