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What questions should I ask my doctor about inherited lipodystrophy?

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Here are some questions for your doctor once your child has been diagnosed with inherited lipodystrophy:

  • What subtype of lipodystrophy is this?
  • Do we need any more tests?
  • How many people with this disease have you treated?
  • What's the best way for us to manage this condition?
  • What other symptoms should I watch for?
  • How often should we see you?
  • Do we need to see any other doctors?
  • Is there anything I can do that will help my child look and feel "normal"?
  • Can we be part of a lipodystrophy research study?
  • Is it important to let other family members know he has this disease?

From: Inherited Lipodystrophy WebMD Medical Reference

SOURCES:

NORD Physician Guides: "Lipodystrophy Disorders."

FDA: "FDA approves Myalept to treat rare metabolic disease."

Lipodystrophy United: "About Lipodystrophy."

University of Texas Southwestern Medical Center: "Lipodystrophy," "Lipodystrophy Therapies."

Genetics Home Reference: "Berardinelli-Seip congenital lipodystrophy."

KidsHealth: "Acanthosis Nigricans."

AACE Lipodystrophy Detection Consensus Statement, , January-February 2013. Endocrine Practice

Endocrine Society, Resource Room Slide Series: "Lipodystrophy: Metabolic and Clinical Aspects."

DermNet NZ: "Lipodystrophy."

Orphanet: "Berardinelli-Seip congenital lipodystrophy," "Familial partial lipodystrophy, Köbberling type," "Familial partial lipodystrophy, Dunnigan type," "Familial partial lipodystrophy associated with PPARG mutations."

Reviewed by Jennifer Robinson on February 2, 2019

SOURCES:

NORD Physician Guides: "Lipodystrophy Disorders."

FDA: "FDA approves Myalept to treat rare metabolic disease."

Lipodystrophy United: "About Lipodystrophy."

University of Texas Southwestern Medical Center: "Lipodystrophy," "Lipodystrophy Therapies."

Genetics Home Reference: "Berardinelli-Seip congenital lipodystrophy."

KidsHealth: "Acanthosis Nigricans."

AACE Lipodystrophy Detection Consensus Statement, , January-February 2013. Endocrine Practice

Endocrine Society, Resource Room Slide Series: "Lipodystrophy: Metabolic and Clinical Aspects."

DermNet NZ: "Lipodystrophy."

Orphanet: "Berardinelli-Seip congenital lipodystrophy," "Familial partial lipodystrophy, Köbberling type," "Familial partial lipodystrophy, Dunnigan type," "Familial partial lipodystrophy associated with PPARG mutations."

Reviewed by Jennifer Robinson on February 2, 2019

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