Sézary syndrome is so rare that patients and families can learn a great deal from hearing how other people have experienced diagnosis, treatment, and day-to-day life with the disease. If you have experience with Sézary syndrome or another form of cutaneous T-cell lymphoma (CTCL), you are welcome to share your story here.
Your submission comes to me privately. Nothing you send will appear publicly or be posted automatically. If I would ever like to quote or publish part of your story on this site, I will contact you first and ask for your permission.
What you might share
- How you were diagnosed and what symptoms led to the diagnosis
- Treatments you have received and how you responded to them
- Side effects, skin symptoms, itching, fatigue, or other challenges
- Your experience with mogamulizumab (MOGA), radiation, transplant, or other treatments
- Things that helped you cope or questions you wish you had known to ask
- Anything you think might help another patient or family facing this rare disease
Share your story
Please protect your privacy. Do not include medical-record numbers, account numbers, full dates of birth, home addresses, or other sensitive personal information. Experiences shared by visitors are personal stories and should not be considered medical advice.
