Living with Sezary syndrome
A blood cancer, a type of skin lymphoma, that causes a red, very itchy rash and swollen lymph nodes in adults.
Understanding Sezary syndrome
In this cancer, T cells (a type of white blood cell) become cancerous. These Sezary cells are found in the blood, skin and lymph nodes. People develop a red, severely itchy rash over large parts of the body and have swollen lymph nodes. It most often occurs in adults over age 60. The cancer can spread to organs such as the liver, spleen and bone marrow, and people have a higher risk of another cancer.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red, severely itchy skin rash (erythroderma)
- Swollen lymph nodes
- Hair loss
- Thick skin on palms and soles
- Nail changes
- Lower eyelids that turn outward
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists, cancer specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cutaneous Lymphoma Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Cutaneous Lymphoma Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Cutaneous Lymphoma Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet. It explains that the skin problems happen when cancerous T cells move from the blood into the skin.
Also known as: ctcl / sezary syndrome; cutaneous t-cell lymphoma/sezary syndrome; sezary disease; sezary lymphoma; sezary syndrome, somatic; sezary's disease
Patient organizations
- Cutaneous Lymphoma FoundationSezary syndrome · United States
- American Cancer SocietySezary syndrome · United States
- Blood Cancer UnitedSezary syndrome · United States
- Lymphoma Research FoundationSezary syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Sezary syndrome.
Explore research for Sezary syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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