Link between Addison's disease and Adrenoleukodystrophy

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Link between Addison's disease and Adrenoleukodystrophy

Postby ALD Life » Wed Nov 28, 2012 5:35 am

Dear readers,

I am writing to introduce you to ALD Life - we are a patients’ support group and registered charity working with patients and families affected with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) – two rare genetic disorders.

Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) are one of the main important causes of adrenal failure/Addison’s disease in males. However, most people including some endocrinologist are still unaware of this existing link.

And, as Adrenoleukodystrophy is a terminal disorder, and there currently is no cure available, we feel it is massively important to raise awareness of this existing link.

That’s why we feel it is particularly important patients, families and medical professionals are aware about the importance of testing those with adrenal failure/Addison’s disease for ALD. We have a statement from a specialist medical professional in this field for you to read below.

Dr Colin Steward:
“Underlying Adrenoleukodystrophy or Adrenomyeloneuropathy (ALD or AMN) is an important cause of adrenal failure in males. The disease is X-linked, meaning that females are carriers for the disease but it is males who develop the major forms of the disease. In some families there may be a history of adrenal failure, nervous system disorders or early death (including sudden unexplained death) in males linked through the female side of the family.

Studies suggest that 50-80% of all boys presenting with adrenal failure will have ALD on testing and 10-35% of all adolescent/adult men. In order to exclude ALD it is important that the very long chain fatty acid (VLCFA) level in blood is measured.

ALD in particular can be very serious. It is a genetic condition where the gene can be dormant or can take effect very suddenly, followed by a rapid deterioration in health. Signs of deterioration include hyperactivity, withdrawal, emotional instability, aggressive outbursts, learning difficulties and deteriorating school performance, memory problems, disturbances of gait, speech or coordination, or impaired vision or hearing.

For more information please visit http://www.aldlife.org where you will find more information on ALD and AMN. You will also be able to contact someone (not a doctor) who may be able to give you some more information and direct you to an appropriate specialist.”

If you have any questions or queries regarding the link between ALD and adrenal failure/Addison’s disease, or the work of our charity in supporting patients and families, please do not hesitate to get in touch by email - info@aldlife.org.

Thank you for your time,

ALD Life
ALD Life
 
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