Living with Intermediate DEND syndrome
A rare genetic form of diabetes in newborns with mild delays in movement, speech, or learning but no epilepsy.
Understanding Intermediate DEND syndrome
It brings insulin-dependent diabetes in newborns, with mild delays in motor, speech, or learning skills. People do not have epilepsy. It begins in the newborn period or infancy.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Diabetes starting in the newborn period
- Mild delay in movement skills
- Mild delay in speech
- Mild delay in thinking skills
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, genetic specialists, hormone specialists and seizure and epilepsy specialists.
- 3Consider genetic testing
Changes in KCNJ11 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation
- 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 Epilepsy Foundation
- 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
Changes in the KCNJ11 gene are listed. It can be inherited in an autosomal dominant or autosomal recessive pattern.
Also known as: developmental delay-epilepsy-neonatal diabetes syndrome, intermediate form; developmental delay, epilepsy, neonatal diabetes syndrome, intermediate form; intermediate dend (developmental delay, epilepsy, neonatal diabetes) syndrome
Patient organizations
- Epilepsy FoundationEpilepsy · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Intermediate DEND syndrome.
Explore research for Intermediate DEND syndrome
Explore actively recruiting Intermediate DEND syndrome studies with HealthSpark.
Find actively recruiting studies for Intermediate DEND 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
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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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