Living with Leptomyelolipoma
A rare birth difference of the lower spine and nerves that can affect feeling, movement, bowel, and bladder.
Understanding Leptomyelolipoma
The lower end of the spinal cord sits abnormally low and is held in place by a mass of fatty tissue in the lower back. This mass includes nerve fibers and fibrous bands. It typically affects sensation, movement, and bowel or bladder function.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary describes these features:
- Changes in sensation
- Movement problems (motor dysfunction)
- Bowel problems
- Bladder problems
- Skin changes over the lower back
- Absent or reduced reflexes
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
Spina Bifida 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: Spina Bifida 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 Spina Bifida 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.
Patient organizations
- Spina Bifida AssociationLeptomyelolipoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Leptomyelolipoma.
Explore research for Leptomyelolipoma
Explore actively recruiting Leptomyelolipoma studies with HealthSpark.
Find actively recruiting studies for Leptomyelolipoma 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
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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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