Adrenoleukodystrophy Family Support

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Adrenoleukodystrophy (ALD) – myelin.org – Funding Medical ...

    https://www.myelin.org/ald-adrenoleukodystrophy/
    Adrenoleukodystrophy (also known as X-linked adrenoleukodystrophy, ALD) is a rare, genetic disorder characterized by the breakdown or loss of myelin – the fatty covering surrounding nerve cells in the brain – and progressive dysfunction of the adrenal gland. As an X-linked disorder, ALD presents most commonly in males and occurs in about one out of every 17,000 births.

ALD / AMN Family Support: What is Adrenoleukodystrophy

    https://aldfamilysupport.blogspot.com/p/what-is-adrenoleukodystrophy.html
    What is Adrenoleukodystrophy ? Adrenoleukodystrophy, or ALD, is an x-linked metabolic disorder, characterized by progressive neurologic deterioration due to demyelination of the cerebral white matter. Brain function declines as the protective myelin sheath is gradually stripped from the brain’s nerve cells. ... ALD FAMILY SUPPORT. Simple ...

ALD Foundation - Raise Awareness

    https://www.aldfoundation.org/
    Welcome to the ALD Foundation. A Short Walk Home: One's Family's Journey with ALD-Written by David Cry. A Short Walk Home is a heartfelt and inspirational memoir of a father raising and ultimately losing a child to the neurological disorder adrenoleukodystrophy (ALD).

Home - Alex - The Leukodystrophy Charity

    https://www.alextlc.org/
    Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in …

Adrenoleukodystrophy - Diagnosis and treatment - Mayo Clinic

    https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/diagnosis-treatment/drc-20369160
    Apr 20, 2019 · Diagnosis. To diagnose ALD, your doctor will review your symptoms and your medical and family history.Your doctor will conduct a physical examination and order several tests, including: Blood testing. These tests check for high levels of very long-chain fatty acids (VLCFAs) in your blood, which are a key indicator of adrenoleukodystrophy.

Adrenoleukodystrophy (ALD) Be The Match

    https://bethematch.org/patients-and-families/about-transplant/diseases-treated-by-transplant/adrenoleukodystrophy--ald-/
    What is adrenoleukodystrophy (ALD)? ALD is a disease you’re born with that affects metabolism. ALD is sometimes called a storage disease. Metabolism is how the body breaks down food into energy. In ALD, the body is missing an important protein (enzyme) to break down fat-based substances.

X-Linked Adrenoleukodystrophy - GeneReviews® - NCBI Bookshelf

    https://www.ncbi.nlm.nih.gov/books/NBK1315/
    Mar 26, 1999 · X-linked adrenoleukodystrophy (X-ALD) affects the nervous system white matter and the adrenal cortex. ... Affected boys benefit from the general supportive care of parents and psychological and educational support. Physical therapy, management of urologic complications, and family and vocational counseling are of value for men with AMN ...

X-linked adrenoleukodystrophy - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/x-linked-adrenoleukodystrophy
    Oct 29, 2019 · X-linked adrenoleukodystrophy is a genetic disorder that occurs primarily in males. It mainly affects the nervous system and the adrenal glands, which are small glands located on top of each kidney.In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is prone to deterioration (demyelination), which reduces the ability of the nerves to relay ...



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