Overview
ALECT2 amyloidosis is a rare condition in which an abnormal protein called leukocyte chemotactic factor 2 (LECT2) builds up in organs, especially the kidneys and liver. This protein folds incorrectly and forms clumps called amyloid deposits that gradually damage these organs over time. The disease is also known as ALECT2 amyloid or leukocyte chemotactic factor 2 amyloidosis. It is now recognized as one of the more common types of kidney (renal) amyloidosis in certain populations. The most common way ALECT2 amyloidosis is discovered is when a person develops chronic kidney disease that slowly gets worse. Many patients have protein in their urine and declining kidney function. The liver can also be affected, sometimes showing up as mildly abnormal liver tests or an enlarged liver, though liver involvement often causes no symptoms. Some patients may not have any noticeable symptoms until the disease is fairly advanced. Currently, there is no specific cure or targeted treatment for ALECT2 amyloidosis. Treatment focuses on managing kidney disease and its complications, including controlling blood pressure, reducing protein loss in the urine, and eventually kidney dialysis or transplantation if kidney failure occurs. Research is ongoing to better understand this condition and develop new therapies. Unlike some other forms of amyloidosis, ALECT2 amyloidosis tends to progress slowly, and many patients maintain stable kidney function for years before needing more intensive treatment.
Also known as:
Key symptoms:
Slowly worsening kidney functionProtein in the urineSwelling in the legs or anklesHigh blood pressureFatigue and tirednessEnlarged liverMildly abnormal liver blood testsLoss of appetiteUnexplained weight lossNauseaReduced urine output in advanced stages
Clinical phenotype terms (12)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Late onset
Begins later in life, typically after age 50
Treatments
No FDA-approved treatments are currently listed for ALECT2 amyloidosis.
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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 ALECT2 amyloidosis.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
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.What stage is my kidney disease, and how quickly is it progressing?,Should my family members be tested for the LECT2 gene variant?,What dietary changes should I make to protect my kidneys?,How often do I need blood and urine tests to monitor my kidney function?,Am I a candidate for kidney transplantation if my kidneys fail?,Are there any clinical trials or new treatments being studied for ALECT2 amyloidosis?,Should I be checked for amyloid deposits in my liver or other organs?
Common questions about ALECT2 amyloidosis
What is ALECT2 amyloidosis?
ALECT2 amyloidosis is a rare condition in which an abnormal protein called leukocyte chemotactic factor 2 (LECT2) builds up in organs, especially the kidneys and liver. This protein folds incorrectly and forms clumps called amyloid deposits that gradually damage these organs over time. The disease is also known as ALECT2 amyloid or leukocyte chemotactic factor 2 amyloidosis. It is now recognized as one of the more common types of kidney (renal) amyloidosis in certain populations. The most common way ALECT2 amyloidosis is discovered is when a person develops chronic kidney disease that slowly
At what age does ALECT2 amyloidosis typically begin?
Typical onset of ALECT2 amyloidosis is late onset. Age of onset can vary across affected individuals.
Which specialists treat ALECT2 amyloidosis?
3 specialists and care centers treating ALECT2 amyloidosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.