Living with Diastematomyelia
A condition present from birth in which the spinal cord is split into two parts, with symptoms from none to back pain and leg weakness.
Understanding Diastematomyelia
The cord is split into two halves (hemicords), separated by a bony structure, creating a double spinal canal. It is present from birth but may show up at any age and is more common in women. Some people have no symptoms. Others have a tethered cord or other spine differences. It is thought to start with abnormal formation of the notochord and neural tube very early in development.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Split spinal cord
- Scoliosis
- Excess hair growth over the spine area
- Back pain
- Bladder problems
- Leg pain or weakness
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
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 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
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- 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 says it is thought to be caused by abnormal formation of the notochord and neural tube very early in development. It lists autosomal recessive inheritance.
Also known as: scm type 1; scm type i; split cord malformation; split cord malformation type 1; split cord malformation type i; split spinal cord
Patient organizations
- Spina Bifida AssociationDiastematomyelia · United States
You are more than your diagnosis
Perspectives from people navigating life with Diastematomyelia.
Explore research for Diastematomyelia
Explore actively recruiting Diastematomyelia studies with HealthSpark.
Find actively recruiting studies for Diastematomyelia 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 Diastematomyelia 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 Diastematomyelia
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 Diastematomyelia 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.