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Medical Disclaimer
The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Arthrogryposis Multiplex Congenita Whistling Face
Overview
Arthrogryposis Multiplex Congenita Whistling Face is an extremely rare disorder, and has only been reported in ten individuals thus far. It is also known as Illum syndrome. This disorder affects both the central nervous system and the autonomous system, meaning that it disrupts the signals sent from the brain to the rest of the body. Individuals with this disorder also have difficulty forming facial expressions, and may experience epileptic seizures, bradycardia (a very slow heartbeat), and severe developmental delays. The life expectancy for a person with arthrogryposis multiplex congenita whistling face is typically only a few months.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
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The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria.
This 100-page handbook helps answer many questions for children with Progeria about how to optimize quality of life through daily care and medical treatment. Contains basic health facts,daily care recommendations and extensive treatment guidelines.
AAMDSIF Online Academy (webinars)
200+ FREE webinars for patients, families and caregivers about rare blood cancers and bone marrow failure diseases.
Educational Resources
Publications, links to patient conferences and webinars
Disease Information
Descriptions of various rare blood cancers and bone marrow failure diseases.