Adrenoleukodystrophy

Healthcare/Doctors

How do I find a center of excellence in X-linked adrenoleukodystrophy?

The Myelin project lists multiple specialists in ALD/AMN here: http://www.myelin.org/resources/aldamnspecialists.html.

You can reach out to a physician near you and/or ask a neurologist or geneticist to reach out to their colleagues.

In addition ALD connect has a link to find a specialist near you here: http://www.aldconnect.org/contact_a_disease_specialist.php.

References
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What specialist doctors should I see with X-linked adrenoleukodystrophy?

If I have X-linked adrenoleukodystrophy, what should my doctor know about managing the disease?

What specialist doctors should I see with X-linked adrenoleukodystrophy?

Specialist doctors for patients with adrenoleukodystrophy will depend on the individual patient’s symptoms. Some specialists a patient might see include an endocrinologist (hormone doctor), neurologist, physical therapist, psychologist, geneticist, and/or a urologist.

References
If I have X-linked adrenoleukodystrophy, what should my doctor know about managing the disease?

Before symptoms are evident for adrenoleukodystrophy, surveillance is very important. This can include brain MRIs to assess for cerebral (brain) changes and function of the adrenal gland. Dysfunction of the adrenal gland can be life-threatening.

References
  • Source: Helman, G., Van Haren, K., Bonkowsky, J. L., Bernard, G., Pizzino, A., Braverman, N., ... & van der Knaap, M. S. (2015). Disease specific therapies in leukodystrophies and leukoencephalopathies. Molecular genetics and metabolism, 114(4), 527-536.

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