Living with Insulin-resistant diabetes mellitus AND acanthosis nigricans
A rare condition (type A insulin resistance syndrome) with severe insulin resistance that leads to diabetes and other changes.
Understanding Insulin-resistant diabetes mellitus AND acanthosis nigricans
The body's tissues don't respond properly to insulin, which affects blood sugar control and leads to diabetes. In females, major features usually show in adolescence. It can begin from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Diabetes (high blood sugar)
- Delayed puberty
- Excess body hair (hirsutism)
- Darkened skin
- Thickened skin (hyperkeratosis)
- Firm lumps under the skin
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 genetic specialists, hormone specialists, maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Consider genetic testing
Changes in INSR 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
Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- Expert care
- Expert lists: Resolve: The National Infertility 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 Resolve: The National Infertility 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
Changes in the INSR gene cause this condition. It can be inherited in an autosomal dominant or an autosomal recessive pattern.
Also known as: diabetes mellitus, insulin-resistant, with acanthosis nigricans; diabetes mellitus, insulin-resistant, with acanthosis nigricans, type a; hereditary benign acanthosis nigricans with insulin resistance; insulin receptor defect with insulin-resistant diabetes mellitus and acanthosis nigricans; insulin receptor, defect in, with insulin-resistant diabetes mellitus and acanthosis nigricans; insulin resistant diabetes mellitus with acanthosis nigricans and hyperandrogenism
Patient organizations
- Resolve: The National Infertility AssociationInfertility · 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 Insulin-resistant diabetes mellitus AND acanthosis nigricans.
Explore research for Insulin-resistant diabetes mellitus AND acanthosis nigricans
Explore actively recruiting Insulin-resistant diabetes mellitus AND acanthosis nigricans studies with HealthSpark.
Find actively recruiting studies for Insulin-resistant diabetes mellitus AND acanthosis nigricans 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 Insulin-resistant diabetes mellitus AND acanthosis nigricans 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 Insulin-resistant diabetes mellitus AND acanthosis nigricans
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 Insulin-resistant diabetes mellitus AND acanthosis nigricans 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.