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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.
Bone Fragility Craniosynostosis Proptosis Hydrocephalus
Overview
Bone Fragility, Craniosynostosis, Proptosis, Hydrocephalus is a type of skeletal disorder mainly characterized by weak bones, early fusing of the bones making up the skull, eyeballs that protrude abnormally out, and fluid buildup in the skull. Bones are important for maintaining the structure of the body and work closely with muscles to provide various movements. Abnormalities in bone growth in various parts of the body can lead to the skeletal system becoming weaker, and thus cause individuals to be less capable of performing important movements, like walking and running. Bone growth abnormalities of the skull can sometimes be related to intellectual disability. Doctors are usually able to diagnose this disorder at birth, as the intellectual disability and bone problems are quickly apparent. Treatment is developed on a case-by-case basis and depends on the specific needs of the patient. For prevention purposes, bone specialists may suggest individuals eat a high-calcium diet, and exercise regularly. If an individual's skeletal problems has progressed, doctors may suggest surgery to fix bone problems. Doctors seek help from various therapists and community services to provide support and care for families affected by intellectual disability.
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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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.