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.
- ALD Connect. Contact a Disease Specialist. http://www.aldconnect.org/contact_a_disease_specialist.php
- The Myelin Project. Specialists. http://www.myelin.org/resources/aldamnspecialists.html
More Healthcare/Doctors Content
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.
- Steinberg, S., Moser, A., Raymond, G. X-Linked Adrenoleukodystrophy. Gene Reviews. Online database. Updated April 2015. http://www.ncbi.nlm.nih.gov/books/NBK1315/
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.
- 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.