PATIENT RESOURCES
Due to its ultra-rare nature, accurate and useful information on Sézary Syndrome is sparse and difficult to find. We know all too well this dearth of available knowledge can add to the fear and anxiety that come with diagnosis and treatments. Even medical professionals have much to learn in this area. This section is dedicated to providing helpful resources for Sézary Syndrome patients and their support networks. We will plan to update with important new info as it becomes available. Always consult with doctors and medical professionals if you need treatment or diagnosis for any specific medical condition.
SEZARY SYNDROME SUPPORT SUBREDDIT
Discussion forum for Sézary Syndrome patients and caregivers moderated by Sézary Syndrome Society founder Mahanth Joishy. A free account is needed to post and comment, but no account is needed to read discussion topics. Those with questions and those with answers are all welcome.
THE CLEVELAND CLINIC
The Cleveland Clinic’s page is a good summary for learning about symptoms, treatments, and other pertinent information for Sézary Syndrome compiled by experts in the field.
CUTANEOUS LYMPHOMA FOUNDATION
The Cutaneous Lymphoma Foundation’s (CLF’s) explainer page has additional information on Sézary Syndrome, diagnosis, and treatment from a nonprofit organization. Also find here info on other cutaneous lymphomas which all affect the skin.
CLF VIRTUAL PATIENT CONFERENCE WEBINAR
This link is a presentation on Sézary Syndrome geared toward patient education by Dr. Jennifer DeSimone, an expert on the condition.
INTERNATIONAL STUDY of TREATMENT EFFICACY IN SEZARY SYNDROME
Link to a 2023 article published by Blood Adv that details treatment efficacy of various approaches to dealing with Sézary Syndrome.
SUMMARY of MAVORIC CLINICAL TRIAL
Link to a 2018 article comparing the treatment efficacy of two common Sézary Syndrome medications, Mogamulizumab and Vorinostat. This is widely considered a landmark trial for the ultra-rare disease examining two different types of common treatments.
SUMMARY OF STEM CELL TRANSPLANTATION for SEZARY SYNDROME
Link to article evaluating bone marrow stem cell transplants for treating Sézary Syndrome, published in Bone Marrow Transplantation in 2021
