Living with Hashimoto-Pritzker syndrome
A very rare skin condition in which red-purple or brown bumps are present at birth and usually go away on their own in a few months.
Understanding Hashimoto-Pritzker syndrome
Babies have single or multiple red-purple or brown pimple-like papules and nodules. They are painless and usually go away on their own within 2 to 3 months. The skin shows more of a type of immune cell called Langerhans cell histiocytes. Most people have several lesions, but about 25% have only one. New lesions in adulthood, recurrence, and lung or eye involvement are very rare.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. The summary describes:
- Red-purple or brown skin bumps (papules)
- Painless lumps or plaques
- Skin lesions that go away on their own
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Histiocytosis Association may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Histiocytosis Association
- 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 Histiocytosis Association
- 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 describes an increase in Langerhans cell histiocytes, a type of immune cell.
Also known as: congenital langerhans cell histiocytosis; congenital self-healing histiocytosis; langerhans cell histiocytosis - hashimoto-pritzker type
Patient organizations
- Histiocytosis AssociationHashimoto-Pritzker syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Hashimoto-Pritzker syndrome.
Explore research for Hashimoto-Pritzker syndrome
Explore actively recruiting Hashimoto-Pritzker syndrome studies with HealthSpark.
Find actively recruiting studies for Hashimoto-Pritzker syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Hashimoto-Pritzker syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Hashimoto-Pritzker syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Hashimoto-Pritzker syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.