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Living with ALPS

Information, shared experiences and research connections for people living with ALPS and those who support them.

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Understanding ALPS

ALPS is an inherited condition in which the body can't properly control the number of a type of immune cell called lymphocytes.

It is caused by gene changes, most often in the FAS gene. Extra lymphocytes build up in the lymph nodes, liver and spleen, and autoimmune problems that attack blood cells often develop, sometimes years after symptoms first appear in childhood.

Signs & symptoms

Signs often begin in childhood and can differ from person to person.

  • Swollen lymph nodes in the neck, armpit or groin
  • Enlarged spleen or liver
  • Tiredness and weakness from anemia
  • Nosebleeds or easy bruising from low platelets
  • More infections from low white blood cells
  • Skin rashes or hives

Tell your care team about new or changing symptoms.

Diagnosis

  1. Health history and exam

    Doctors look for lymph node swelling that is not cancer and lasts more than six months, autoimmune problems affecting blood cells, and any family history of ALPS.

  2. Blood tests

    Lab tests can look for higher-than-usual levels of certain T cells (called double-negative T cells) and other markers linked to ALPS.

  3. Genetic testing

    Testing can look for changes in FAS or other genes linked to ALPS to help confirm the diagnosis.

Care & treatment

Monitoring
Regular checkups and imaging help your team watch the lymph nodes and spleen and look for lymphoma, which is more common in people with ALPS.
Treatment
There is no standard cure yet; care focuses on treating low blood counts and other autoimmune problems, often with medicines that calm the immune system.
Your plan
Removing the spleen is rarely needed and raises the risk of serious infection, so choices like this are made carefully with your care team.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Simple records can help your team spot changes over time.

  • Keep a log of swollen lymph nodes, bruising, nosebleeds and infections, with dates.
  • Keep copies of blood test results, imaging reports and any genetic test results.
  • Collect your family health history, since ALPS can run in families.
Bring these questions to your next doctor visit
Which gene change was found, and what could it mean for my family members?
How often should I have imaging or blood tests to check my lymph nodes, spleen and blood counts?
What signs of infection, bleeding or lymphoma should make me contact you right away?
Sources: NIH GARD — ALPS · MedlinePlus Genetics — ALPS · NIAID — ALPS overview · NIAID — ALPS symptoms & diagnosis · NIAID — ALPS treatmentPage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

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Explore research for ALPS

Explore actively recruiting ALPS studies with HealthSpark.

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Find actively recruiting studies for ALPS with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • 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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