Overview
Granulomatous slack skin (GSS) is an extremely rare type of skin lymphoma — a cancer that starts in white blood cells called T-cells that live in the skin. It is considered a subtype of mycosis fungoides, which is the most common form of cutaneous T-cell lymphoma. GSS has its own distinct features that set it apart from other skin lymphomas. The most striking feature of GSS is the gradual development of loose, hanging, wrinkled skin — especially in the armpits (axillae) and groin area. This happens because the cancerous T-cells destroy the elastic fibers in the skin, causing it to lose its firmness and sag. Under a microscope, doctors can see clusters of immune cells called granulomas, which is how the disease gets its name. GSS progresses very slowly over many years. Most people are diagnosed in adulthood, though it can appear earlier. Because it is so rare, treatment is not fully standardized, but options include skin-directed therapies, radiation, and systemic treatments used for other lymphomas. A notable concern is that a significant number of people with GSS also develop another lymphoma called Hodgkin lymphoma, so ongoing monitoring is very important.
Key symptoms:
Loose, sagging, wrinkled skin especially in the armpits and groinSlow-growing skin plaques or patches that become pendulous over timeSkin that hangs in folds due to loss of elasticityItching of affected skin areasRedness or discoloration of the skin in affected areasGradual enlargement of affected skin areas over yearsPossible swollen lymph nodesFatigue in some cases
Clinical phenotype terms (10)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Granulomatous slack skin.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Granulomatous slack skin.
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How advanced is my disease, and do I need treatment right now or can we monitor it first?,What is my risk of developing Hodgkin lymphoma or another type of lymphoma, and how will you monitor for this?,Which treatment option do you recommend for me, and what are the side effects?,Will the sagging skin ever improve, and are there any options to address it?,How often do I need follow-up appointments and what tests will be done at each visit?,Should I see a specialist at a center that has experience with cutaneous lymphomas?,Are there any clinical trials I might be eligible for?
Common questions about Granulomatous slack skin
What is Granulomatous slack skin?
Granulomatous slack skin (GSS) is an extremely rare type of skin lymphoma — a cancer that starts in white blood cells called T-cells that live in the skin. It is considered a subtype of mycosis fungoides, which is the most common form of cutaneous T-cell lymphoma. GSS has its own distinct features that set it apart from other skin lymphomas. The most striking feature of GSS is the gradual development of loose, hanging, wrinkled skin — especially in the armpits (axillae) and groin area. This happens because the cancerous T-cells destroy the elastic fibers in the skin, causing it to lose its fi
How is Granulomatous slack skin inherited?
Granulomatous slack skin follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Granulomatous slack skin typically begin?
Typical onset of Granulomatous slack skin is adult. Age of onset can vary across affected individuals.
Which specialists treat Granulomatous slack skin?
1 specialists and care centers treating Granulomatous slack skin are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.